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washed-out
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Young clusterhead with pituitary tumor
« on: Nov 24th, 2007, 1:46pm » |
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Hi! First of all I would like to apologize for my poor English. Usually I try to do my best but now I am after pain attack and really can't think very well. If you don't understand something important just write about it and I will try to explain better.
I am 17 years old and I have been suffering from cluster headaches (I think) for one year. Before that I had chronic conjunctivitis so it was pretty hard to diagnose (my oculists couldn’t find any “oculistic reasons” of my pain. And then I read one short article about headaches. I have read “Cluster/Horton’s headaches” paragraph and almost all symptoms were describing my pain...
I went to the neurologist after 6 months from my first attacks. She just gave me dihydroergotamine (drops), which I took almost everyday between March and July. (I also had Computer Tomography but it didn’t show anything). I have to say that it was pretty helpful for preventing cluster headaches and I had attacks only sometimes. Each month I had to take bigger doses (small didn’t help) but I was just afraid to take this medicine for so long period of time and since August I take it only sometimes.
Some time ago my “family doctor” suggested to make a MRI. I had it in October and it detected small tumor located in the frontal lobe of my pituitary. It is pretty small (6x3 mm). Another interesting thing – it is located on the right, while my attacks are almost always left-sided. It may be pituitary adenoma but it is “inactive” (doesn’t product/block hormones). Of course I will visit one of my doctors soon (around 14 December) but I really don’t know what to think/do. Almost every neurologist say that it is his/her second/third patient with cluster headaches but they didn’t have any tumors. Anyway they said that even small neoplasm can bring different types of pain. Though I suppose that there isn’t any way to check if my attacks are “normal” cluster headache attacks, or they are affected by this tumor. I have read “Cluster Headaches FAQs” and there was something about it...
I tried few medicines. Common painkillers, Flamexin, Naproxen, Dihydroergotamine – none of them stop my attacks (Dihydroergotamine can prevent). Only Coffecorn (Ergotamine with Coffeine) alleviates SOMETIMES, usually for “mild attacks”.
Sometimes it is only annoying and “acceptable” but sometimes it is horrible. I squeeze my eye and just want to hit wall with my head... You can say that it is nothing, compared to someone who has been suffering from cluster headaches for few years. Anyway it is very hard to live with that. I can’t function normal. Almost always I was the best pupil and had very good marks, I had many passions and things I liked to do – now I go to the school only sometimes and can’t do most of the thing I like to do...
To be honest I don’t know why I wrote that. Maybe I just wanted to share my feelings with the other people who have similar problem (unfortunately most of the people doesn’t understand it, even doctors!). I would also want to know what do you thing about this tumor. And what else should I do... (of course I am not lazy and I read your site and many other, but I really don’t know what to do).
Best regards.
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| « Last Edit: Nov 24th, 2007, 1:50pm by washed-out » |
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Sean_C
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Re: Young clusterhead with pituitary tumor
« Reply #1 on: Nov 24th, 2007, 2:05pm » |
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I'm not sure if the tumor is an operable option, or if its something your doctor is considering, I am in no-way qualified to make even an assumption. I do believe someone here does have a similar anomoly, I'm not sure but I thought it was Cat.
I had cluster headaches at an early age, I suffered through the school years, eventually leaving school unfortunately.
Have you been officially diagnosed with cluster headaches ? You stated you "think".
Sean...................
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Bob_Johnson
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Re: Young clusterhead with pituitary tumor
« Reply #2 on: Nov 24th, 2007, 2:14pm » |
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Your English is better than that used by many Americans! <bg>
The dilemma is that you can have symptoms which are cluster-like even though you don't have cluster headache (as a diagnosis). Clearly, your docs need to do some research to help sort out the two problems you know about.
Non-medical suggestion: Are your docs willing to use standard cluster treaments to control your headaches? Next are two links to print out and share with them.
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HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen)
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Treatment guidelines from Europe
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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.
Download free full text:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)
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Want to refer you to a new site which will give some excellent materials on Cluster to help you understand the condition.
http://www.medifocushealth.com/NR019/index.php
Good source of medical information for a broad range of serious medical condition. Worth exploring. This link direct to CH.
(Thanks to "DrBB" for directing to this site, 11/07.)
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There is much more useful information which you can find by exploring the buttons (left) and in the OUCH site (left).
Please stay in touch as your reading and work with our doctors will create new questions for you.
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| « Last Edit: Nov 24th, 2007, 2:16pm by Bob_Johnson » |
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Linda_Howell
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Re: Young clusterhead with pituitary tumor
« Reply #3 on: Nov 24th, 2007, 3:41pm » |
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Two things:
Quote:| Hi! First of all I would like to apologize for my poor English. |
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Your English wasn't poor at all. In fact...you were very articulate.
Quote:
To be honest I don’t know why I wrote that. Maybe I just wanted to share my feelings with the other people who have similar problem |
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One of the main reasons this web site exists is for us to blow off steam, ask questions and be able to rant and rave to others who understand EXACTLY what frustrations you are going through. So please continue to talk about anything you wish to here.
One thing that I found depressing is that you are only 17 and it seems like you may not be getting what you need from your Dr.s right now and that is why you are
Quote:I can’t function normal. Almost always I was the best pupil and had very good marks, I had many passions and things I liked to do – now I go to the school only sometimes and can’t do most of the thing I like to do...
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I think that once you have a diagnosis and are being treated correctly you will learn to live between the hits as we call them and not have CH rule your life to the point of not going to school or doing the things you are passionate about.
Linda
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aloneuk
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Re: Young clusterhead with pituitary tumor
« Reply #4 on: Nov 24th, 2007, 4:01pm » |
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Annette
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Re: Young clusterhead with pituitary tumor
« Reply #5 on: Nov 24th, 2007, 7:48pm » |
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Adenoma in the pituitary gland is fairly common. Many are inactive ( ie dont produce hormones ) and they dont do anything at all. Its those which are growing and/or becoming active that can cause problem. Many are found incidentally on head scans of even normal people. Most dont need to be surgically removed unless they get too big and start to squash down on the optic nerve. Active ones that produce hormones usually can be switched off by treatment with medications. Pituitary hormones do have effects on the hypothalamus. However, I dont think the inactive and small ones would be causing any harm.
Have you tried oxygen ? along with ice, water X3 , energy drinks like Redbull and cafeine? These are natural and much safer to use to abort CH attacks. Many people here can use oxygen alone to get rid of up to 70-80% of the hits.
All the best and painfree wishes to you.
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washed-out
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Re: Young clusterhead with pituitary tumor
« Reply #6 on: Nov 26th, 2007, 4:28am » |
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Thanks a lot for all replies
on Nov 24th, 2007, 2:05pm, Sean_C wrote:I'm not sure if the tumor is an operable option, or if its something your doctor is considering,
Have you been officially diagnosed with cluster headaches ? You stated you "think".
Sean................... |
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It was like:
- first neurologist said that it is Horton's syndrome (CH name isn't very popular; she said that I am her 3rd patient with that disease and previous were a bit older; CT didn't show anything, oculistic results were also OK, so he just gave me medicines;
- after few months (during last holiday) "family doctor" (don't know how do you call them in English, someone who treats you when you have a "basic diseases like flu" and send you to specialist if needed) said that maybe we should make MRI (just to be 100% sure that it isn't anything serious);
- before MRI I felt really bad and I went to pretty well known neurologist (one of the best in Poland); he said "like Horton's syndrome" and gave me some medicines (you probably don't know them very well - Nicergolin and Flamexin, second is something like Naproxen I believe) and told me to wait for MRI result ("MRI always can show something interesting" ; when I came back with a result he said: "well it is very good that we know a cause, it is half of a success, you should go to neurosurgeon and remove it" (I asked if pharmacological treatment isn't better but he said, that it would be better to make a surgery, then I would finally feel normal);
- so I went to neurosurgeon... he checked MR images, said that some pituitary tumors should be removed, and some of them shouldn't, and he asked me to do some endocrinology (hormones) tests; I also told him that my pain is located on a left while tumor is on a right but he said that it doesn't matter (hey! at least pituitary is located in the center and is very small :>;
- I was in an "under 18" hospital for almost two weeks and I had few tests; I will know EEG result next week (though last one, from March or April was "incorrect"/not really good); EKG, Heart Echo and USG Doppler (neck arteries) didn't find anything wrong; blood tests (including hormones) were surprisingly good; although it was endocrinology departament, neurologist also consulted me; she said once again "Horton's like" and told me that I am her second patient with that issue... overall they are focused and kids and usually adults suffer from CH; endocrynologist also told me, that pituitary tumors (adenomas) are really "popular" last time but none of previous patients had similar problem; they just told me to consult my neurosurgeon/neurologist once again;
And here I am... I will visit my neurosurgeon once again, after 14th December (he is in Japan at the moment); I think that I will try to take small dozes of dihydroergotamine during those two weeks (to feel acceptable), because I have some important things to do.
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washed-out
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Re: Young clusterhead with pituitary tumor
« Reply #7 on: Nov 26th, 2007, 4:55am » |
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Sorry that I am replying in another post but it is easier (I mean previous one was quite long)
on Nov 24th, 2007, 2:14pm, Bob_Johnson wrote:
Non-medical suggestion: Are your docs willing to use standard cluster treaments to control your headaches? |
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Answer is simple - I don't know  I thought that dihydroergotamine is pretty "standard". Well it is much safer that just ergotamine (I use/d Coffecorn, ergotamine with caffeine, only to stop attacks and overall I took only 30 pills of "mite version". I know that overall ergotamine isn't safe but I hope that I want suffer from some "side effects" later (it would appear during taking it, I guess).
Anyway thanks a lot for you links, I will print it later and I will mark out the most important fragments.
on Nov 24th, 2007, 7:48pm, Annette wrote:
Adenoma in the pituitary gland is fairly common. Many are inactive ( ie dont produce hormones ) and they dont do anything at all. Its those which are growing and/or becoming active that can cause problem. Many are found incidentally on head scans of even normal people. Most dont need to be surgically removed unless they get too big and start to squash down on the optic nerve. Active ones that produce hormones usually can be switched off by treatment with medications. Pituitary hormones do have effects on the hypothalamus. However, I dont think the inactive and small ones would be causing any harm.
Have you tried oxygen ? along with ice, water X3 , energy drinks like Redbull and cafeine? These are natural and much safer to use to abort CH attacks. Many people here can use oxygen alone to get rid of up to 70-80% of the hits.
All the best and painfree wishes to you. |
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No, I haven't tried Oxygen at all. I heard that it can be helpful but I don't know how much would it cost and if it is safe to keep bottle of Oxygen in my house  Water X3 - also not but I drink a lot of water everyday (2-4 L). Energy drinks and caffeine also don't seem to work. But I remember one really heavy attack (few times during two days). I couldn't do anything, it was 4 a.m. and I took 3 Coffecorn's pills (ergotamine+caffeine) and drank 3 Red Bulls and at least I could sleep... (hehe funny, so big portion of caffeine and I could fall asleep I was just too exhausted).
I am only curious if it is definitely adenoma. Maybe it is another thing (different tumor)? It doesn't product hormones at all. On MRI description there was something like that: "6x3 mm change in pituitary, with specified clinical symptoms it can suit pituitary microadenoma". Neurosurgeon also didn't say "adenoma" but just "pituitary tumor".
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Bob_Johnson
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Re: Young clusterhead with pituitary tumor
« Reply #8 on: Nov 26th, 2007, 7:15am » |
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Responding to your last message about the medications you are using:
1. Because brand names change from country to country, please use the chemical name or we cannot understand what you are taking. (Imitrex is a brand name for sumatriptan, for example.)
2. Ergotamine in it's various formulations are safe if not used to excess for too long a time. The main problem is that it isn't very effective for Cluster headaches. This is a major reason I send the links about commonly used medications. They will give you the most up to date recommendations.
3. Non-prescription pain medications have no value for Cluster.
4. Don't be concerned about whether the doctor calls them Cluster Headaches or Horton's. There have been many names, over the years, for the same condition. It's only important that you are talking about the same condition! [A major reason we are not responding to you in Polish!! <bg>]
5. You are in a frustrating position--with three doctors understanding the issues somewhat differently and you being the poor guy caught in the middle! We can only encourage you to not give up pressing them to work out their different views so that you can receive the best care.
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| « Last Edit: Nov 26th, 2007, 7:16am by Bob_Johnson » |
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washed-out
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Re: Young clusterhead with pituitary tumor
« Reply #9 on: Nov 29th, 2007, 5:34pm » |
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on Nov 26th, 2007, 7:15am, Bob_Johnson wrote:Responding to your last message about the medications you are using:
1. Because brand names change from country to country, please use the chemical name or we cannot understand what you are taking. (Imitrex is a brand name for sumatriptan, for example.)
2. Ergotamine in it's various formulations are safe if not used to excess for too long a time. The main problem is that it isn't very effective for Cluster headaches. This is a major reason I send the links about commonly used medications. They will give you the most up to date recommendations.
3. Non-prescription pain medications have no value for Cluster.
4. Don't be concerned about whether the doctor calls them Cluster Headaches or Horton's. There have been many names, over the years, for the same condition. It's only important that you are talking about the same condition! [A major reason we are not responding to you in Polish!! <bg>]
5. You are in a frustrating position--with three doctors understanding the issues somewhat differently and you being the poor guy caught in the middle! We can only encourage you to not give up pressing them to work out their different views so that you can receive the best care. |
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1. Sure, I understand. I only used names Flamexin and Nicergolin - I checked and both medicines are used only in few countries but later I will check their chemical composition, anyway they didn't help so we shouldn't talk about them (Dihydro)Ergotamine, Naproxen - international. Coffecorn - ergotamine + caffeine.
2. Well when I was taking dihydroergotamine in drops everyday (medium-high doses) I had only few attacks... So it was pretty effective. Though after some time only big doses worked for me and I was too afraid to use it longer. Of course thanks for those links, I hope that something will finally help me.
3. Yeah, unfortunately I tried them only few times, even those very hard. The most annoying/irritating/frustrating is that some people just don't understand (even some doctors!) that it doesn't help and they think that I don't want to destroy my liver (sarcasm) and I like to live with that pain ("take it, lay down and try to fall asleep...".
4. I know, on my medical certificate for teachers I got "periodic strong cluster headaches (Horton's syndrome)".
5. Exactly, the worst thing is that I don't know who can help me Anyway thanks for lifting my spirits
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Today I asked my family doctor to give me prescription for Imigran (Imitrex/sumatriptan) in nasal spray. We will see whether it is good for me or not. Unfortunately it is very expensive. One pill costs 10-15 $, nasal spray 30 $ (I don't know how many dozes does it contain, around 4 I guess). I heard that it works very well with Naproxen. I also ordered small bottle of O2, just to check. Anyway I still need something preventative.
I don't have big choice now. I just need to wait for my neurosurgeon, he should come back to Europe in one-two weeks (for sure before Christmas). I will show him my results from the hospital, give him list of CH medicines and maybe he will recommend proper neurologist (the most well known one sent me to neurosurgeon... so we will see).
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Someone already wrote something about it - maybe my headaches are not even CH... Of course I have read the list of symptoms but maybe I should write about my pain? It will be hard to describe it correctly in English for me, but I will try...
periodicity: I just don't know... I haven't been suffering from CH for enough long period of time. I can only say that there are many types of my day:
- completely pain free
- one-two short attacks, 10-40 mins, after I feel acceptable
- really strong attacks, it is really hard to function during those days
- horrible pain, almost all the time (there are some breaks), for example I can't do ANYTHING for two days
it is very hard to talk about time, because during strong attacks I push/squeeze my eye; later it is hard to say if my head still hurts or it is my "exhausted eye"
symptoms:
- almost always left-sided
- always my ear is warm, during strong attacks HOT (like very high fever, but I don't have a fever); during mild attacks some parts of my ear pulsate, during the strongest whole ear pulsates;
- my eye hurts very much; it feels like icicle between my eye and the skull; "external corner" of my eye (this one neer a temple) is running but it isn't like crying, tears stay under conjunctiva; very often my eye (conjunctiva) is also red);
- left side of my face is usually pink/red, at least it looks different than right side (different colour);
- sometimes (really sometimes) I have only left-sided catarrh;
- I didn't note that before, but when I was @ the hospital, my attacks started usually when I was laying (same happend yesterday).
Now I think that maybe my spine affect this pain :/ But I don't know if it is possible (I will ask neurosurgeon).
Poor ilustration from Paint:
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| « Last Edit: Nov 29th, 2007, 6:09pm by washed-out » |
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catlind
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Re: Young clusterhead with pituitary tumor
« Reply #10 on: Dec 1st, 2007, 2:48pm » |
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on Nov 24th, 2007, 2:05pm, Sean_C wrote:I'm not sure if the tumor is an operable option, or if its something your doctor is considering, I am in no-way qualified to make even an assumption. I do believe someone here does have a similar anomoly, I'm not sure but I thought it was Cat.
Sean................... |
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Yes it's me that has the CH and a pituitary tumor. Until recently it was considered an incidental finding (the pit. tumor) and that surgery and removal would not benefit the clusters.
Prof. Goadsby of the UK has published several papers on pituitary disorders and clusters. He was able to get the IHS (international headache society)to change it's classifications for CH based on his research.
CH has always been considered a primary headache disorder, but now has a secondary classification - secondary CH due to pituitary disorders.
If you are interested I can forward you the research papers that I have. Prof. Goadsby is now in the US in California.
Once things settle down here around my house I am planning on getting my docs here to write out my info and forward it to him, and to let them read his research.
Have you been to see an endocrinologist yet washed_out? You really do need to have all the endocrine systems tested to be certain it is a non producing tumor. It took them over a year of testing to get back results, and in the interim they came back with a few false positives on some nasty diseases too - so be prepared to hear some crazy stuff and have it turn out to be a false positive.
In some cases treating the pit. tumor can alleviate the CH.
Patients who have secondary CH to pituitary disorders tend to be intractable and not respond to conventional therapies very well.
Cat
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| « Last Edit: Dec 1st, 2007, 5:20pm by catlind » |
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washed-out
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Re: Young clusterhead with pituitary tumor,
« Reply #11 on: Dec 2nd, 2007, 6:22pm » |
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Thanks a lot for your reply! Those papers would be very useful.
Well, I have already seen an endocrinologist. Neurosurgeon forwarded me to him (as he said that some pituitary tumors should be removed and some of them shouldn't, depends of hormons etc.).
I was @ the hospital for one week and all tests were surprisingly good. Including hormones... I had complete hormones profile and everything is good (except one... female hormone - estradiol but it wasn't really big). So not, this tumor isn't an active one.
Form the endocrinological point of view I should just stay in my current position and make a MRI each 6 months.
By the way - what did your doctor say - that active or inactive ones are "connected" with CH? Thanks in advance.
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washed-out
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Re: Young clusterhead with pituitary tumor
« Reply #12 on: Jan 18th, 2008, 7:55pm » |
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BIG UPDATE ON MY SITUATION
Hey! Maybe it isn't that big update but I think that it is pretty important. I'm sorry that I don't write on this forum very often but reading a lot of text and writing in English is quite tiring as I am not a native English speaker.
I don't have accurate treatment yet but fortunately I am very close to it... Little reminder: I had gone to well-known neurologist (but his specialization is SM/Alzheimer/Parkinson etc. he isn't very good at headaches) with "CH-like headaches" and pituitary tumor. He said that it should be removed and sent me to neurosurgeon. Neurosurgeon who is probably the best in Poland (he attends many international meetings, like in Japan in November) directed me to an endocrynologist. I spent few days @ hospital but all hormones were OK. It was under 18 yo hospital and neurologist said that she hasn't had any patient with CH... So I came back to neurosurgeon and he said that pituitary tumor definitely doesn't affect my CH and he said that my hope is one retired professor from another city who has written many books about headaches and he spent almost whole life on it...
And here my story stars again. 300 kilometers by train but it was worth. I told him about everything and of course he started to talk about CH. He said that he has seen around 500 patients with this disease when he was working on it with some doctors from Sweden. None of them reported red and pulsating ear with CH. BUT he said that one doctor from Australia, his friend, discovered or worked on "RED EAR SYNDROME" or something like that. Usually it doesn't bring the pain but it often shows up with many headaches (migraine, cluster etc.).
AND READ THIS!:
I took all my old medicines for that trip (tho I don't take any atm). I was showing them one after one and he just couldn't belive that anyone gave me it. First of all said that those medicines are 30 years old and they shouldn't be used for CH as there are many better. Also dihydroergotamine isn't enough strong. He was even more surprised because previous doctors diagnosed cluster headaches but didn't use proper treatment. He agreed only on Imigran (Sumatriptan) which I know from the Internet! (I asked family doctor to give me it but I was afraid to use it) and he said that it's the only medicine which can stop an attack (except Oxygen). I was happy because finally I found proper doctor. Anyway he said that he doesn't want to start treatment because he gave me the name of very good headaches specialist from my city and maybe she will want to start it in different way (he said that he wants to control treatment and it's just sensless to spend whole day to visit him).
He also said that Imigran shouldn't used too often (only when really needed) and it's not the goal to use it. He said that 'we' should try to avoid attacks and he said that there is one very good drug... Guess how is it called. Verapamil (sic!). Finally I found really good doctor. He was only afraid because my EKG (it's called ECG in English, right?) showed some small disorders with my heart and he said that I should visit cardiologist.
I am one hour after visititing cardiologist (yes, he works till 00-01 am!). He made another ECG and said that I can use any treatment except steroids (I weight pretty much after taking Polcoltoron in the past). He wrote "Patient can use maximal therapeutic doze of Verapamil (Isoptin) - 2x240mg." I hope that it's enough!
Yay I am really happy now I hope to visit neurologist next week and I hope to get Verapamil
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washed-out
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Re: Young clusterhead with pituitary tumor
« Reply #13 on: Jan 18th, 2008, 7:59pm » |
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Ah this professor from another city said also that in this huge group of patients with CH some of then had pituitary tumors (adenomas) but they were much bigger and after removal they still suffered from CH.
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RichardN
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Re: Young clusterhead with pituitary tumor
« Reply #14 on: Jan 19th, 2008, 12:48am » |
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Congratulations on finding some docs who seem to be putting you on the right path.
Verapamil is one of the first-line preventives for CH. Usually though, it's prescribed as a "taper" drug . . . dose starts out small (say 80 mg, maybe twice daily), and then upped until you reach the dose that controls the attacks. I had my first PF day when I hit 240 mg . . . then settled at 360mg per day. Many here take much higher doses and sometimes in combination with Lithium or other meds. Don't be surprised if you have some constipation taking Verapamil . . . many do (I did), some don't . . . easily remedied with diet change or stool softeners.
You mentioned you had a script for Imagran (called Imitrex here). Sumatriptans are vaso-constrictors, meant to constrict the dilated blood vessels which are putting pressure on our trigeminal nerve, which causes the pain. Take the pressure off the nerve . . . pain goes away.
I can't take Imitrex (Imagran) due to some artery blockage and high cholesterol . . . can be VERY dangerous if you have these conditions and you take sumatriptans . . . . make sure your doc(s) are fully aware of any heart problems which could be complicated by the Imagran.
Having said that, . . . my only abortive is 02, and I can usually kill the beast in minutes if used early-on in the attack . . . and no side effects. Must be used at 12-15 lpm with (and this is IMPORTANT) a non-rebreather mask. Most here who use sumatriptans, use the 02 first and save the triptans (injectables most effective) for the attacks the 02 doesn't reach.
You said you had a bottle of 02. Have you had the opportunity to try it with the correct mask? . . . at the correct rate?
Hope to hear back from you soon.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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deltadarlin
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Re: Young clusterhead with pituitary tumor
« Reply #15 on: Jan 19th, 2008, 1:08pm » |
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Hey washed-out,
Not sure if my daughter could help you, but she speaks some Polish (not sure how fluently right now), plus she has tons of friends who live in Poland (krakow). If you have a myspace page, forward it to me, either in this forum or via a privaate message.
Carolyn
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maryo
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Re: Young clusterhead with pituitary tumor
« Reply #16 on: Jan 19th, 2008, 2:03pm » |
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My word, you are 17 and Polish and conversing in a complex subject with English speakers. Kocham wasz samoportret! Wouldn't it be wonderful to have a page on this site with self-portraits of clusters?
Obmy?lam was macie dobre powodzenie. Mainly you've located helpful professionals, so you should be on your way to relief. It all takes time, unfortunately. Better than in the past, I imagine. I had a Polish friend when the communists still ruled who described nightmarish waits for health care.
I work in the medical field, and it's not uncommon for someone to experience symptoms and having findings that could be related but are not.
I did want to say that I, too, can have cluster headaches triggered by posture. At times rollinig onto my cluster side in bed would set one off. Bad sitting posture in the past has set them off. I don't know if I get "red ear" because I haven't looked, but some of my clusters feeling like that side of my head is on fire.
To jest te? z?ym co wy doznajecie przy takim m?odym wieku. On the other hand, you are doing a great job straightening this out. I hope you are getting good support from family/friends.
I also wanted to say that I have success with dihydroergotamine. But I worship imitrex (sumitriptan). You go from wanting to die to euphoric in a very short time.
Dobre szcz??cie!
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washed-out
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Re: Young clusterhead with pituitary tumor
« Reply #17 on: Jan 25th, 2008, 2:42pm » |
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Thanks for previous post, I will reply later.
I took Isoptin 80mg three times today (8:00, 14:00 and 20:00) and I feel pretty bad... Probably low blood's pressure (I checked and I had 110/50, usually 120-130/80-90). Maybe I need to get used to it, it's the first day
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MJ
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Re: Young clusterhead with pituitary tumor
« Reply #18 on: Jan 26th, 2008, 12:34am » |
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on Jan 25th, 2008, 2:42pm, washed-out wrote:Thanks for previous post, I will reply later.
I took Isoptin 80mg three times today (8:00, 14:00 and 20:00) and I feel pretty bad... Probably low blood's pressure (I checked and I had 110/50, usually 120-130/80-90). Maybe I need to get used to it, it's the first day |
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Better report to your doctor.
Thats a fairly big drop in BP.
This is one of the reasons many start with a lower dose of Verapamil (Isoptin) You may have to work your way up to higher doses slowly.
Someone more familiar with using this drug will respond I hope but maybe you should cut back a bit initially as your just starting it.
http://www.drugs.com/mtm/isoptin.html
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MJ
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maryo
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Re: Young clusterhead with pituitary tumor
« Reply #19 on: Jan 27th, 2008, 5:04pm » |
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I started with 120 long acting once a day. I requested change to short-acting. My BP to start with was 120/80.
From 40 mg short-acting 3x day I added 20 mg each dose every 5 days. I seemed to find help at 80 mg 3x day.
I did feel washed out and a little light-headed at times the first week or two. My BP went down to something like 102/55. But my body got used to it and actually my BP is the same as when I started.
Increasing your fluid intake will support your blood pressure and also hopefully help prevent constipation.
Translating to Polish is hard without the right characters!!!
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washed-out
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Re: Young clusterhead with pituitary tumor
« Reply #20 on: Jan 31st, 2008, 7:18pm » |
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Hmm my mum visited her today (cause I didn't have free time). Well this Isoptin didn't help me at all (I had 4 attacks on Tuesday, in the evening) and I feel even worse (it feels like veeery low BP, but it isn't that low in fact... I just feel tired all the time).
She said that it doesn't have to help that fast, is it true? I mean that I have to take it longer to see real effects of treatment. She also told to try lower dozes now (40mg at 8 and 14, 80mg at 20 and 2 am, when my attacks usually occur).
She also gave me Lignocaine, 2 drops when attack starts. Ye you may say "why not Imigran/another sumatriptan" but it's too dangerous to take them in my situation.
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maryo
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Re: Young clusterhead with pituitary tumor
« Reply #21 on: Jan 31st, 2008, 10:44pm » |
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Yes, the verapamil takes time to work. Would your MD give you steroid meds for a short time until your verapmil achieves an effective level? Most common here is Prednisone. I'm assuming you've tried all the non-medication things -- cold pack on head, coffee (I have ready at room temperature to gulp down), etc.? The pain always made me experiment. I forget what you said about getting oxygen. You must use large amount. A "small bottle" will not be enough. A bottle not quite a meter tall is better.
I did feel tired when I started verapamil. It kept getting better. I don't know if it eventually worked or my cycle ended. Very often we are not 100% sure what works.
A few years ago the kudzu worked for me. Then one day it made it all worse. Worth a try.
KONTAKTOWA? SI?
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5Almigos
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Re: Young clusterhead with pituitary tumor
« Reply #22 on: Feb 9th, 2008, 6:31pm » |
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Hi there,
I'm German but have been living in the USA for 8 years. I'm 39 and the CHs started 18 months ago with an average of 3 hits per day.
I also have a small inactive pituitary tumor and hoped, that would be the cause for the pain. I'm officially diagnosed with MS and Migraines. I actually have Lyme disease and CCH.
You need to do your own research and find a doc., who listens and will work with you. I haven't had an attack in over 30 hours, but I'm drinking gallons of strong coffee.
I used to take prescription painkillers. They did nothing for me but produced rebounding pain. I took 10 Vicodin a day and developed a drug dependency. Now, I stay off pain medication. I'm taking Dilantin right now, but it only poorly controls the attacks. I will try Melatonin next week and get a script for O2.
The attacks I have, are on the right and pulsating.
Gotta go. Good luck to you,
Sonja
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washed-out
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Re: Young clusterhead with pituitary tumor
« Reply #23 on: Feb 12th, 2008, 9:54am » |
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Really thanks for all your replies.
Unfortunatelly I am really disappointed by Verapamil/Isoptin :/ Yesterday I called this doctor from another city and he said that I should be more patient... But I have been taking Isoptin for almost one month, I still have one-two attacks everyday and I feel really horrible. For example this night I slept around 6 hours, it is OK, isn't it? But I feel like I haven't slept for 48 hours... (though my BP isn't that low). Once during attack I took Lignocaine and drank energy drink, it helped me a bit...
I will visit my doctor this or next Thursday (I can call her anytime but it's better to have longer visit IRL). I will ask about Oxygen (ye, she was talking about that during first visit but I don't know if I can get it cheaper with prescription here, in Poland.
But I definitely need something preventative. I will ask about Sansert too. Obviously I need something which works like coffeine.
I got one pretty important question:
I have read that for most of the people laying down during attack isn't helpful. I also heard about attacks which wake you up. But did you report that your attack start when you lay down? For example - you feel normal all day, in the evening you go to bed and then attack starts?
I started to think that it's "Red Ear Syndrome", or atleast RES connected with Cluster Headaches. It's very pity that it's very hard to find anything about that in the Internet, I guess that it's even less "popular" than CH! Professor told me about his friend from Australia (not sure), who was working on that... None of his ~400 patients with CH reported red ear (and I did). My ear is ALWAYS red and pulsating when I got those headaches... Moreover my attacks always start from red ear... Really strange.
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maryo
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Re: Young clusterhead with pituitary tumor
« Reply #24 on: Feb 12th, 2008, 10:02am » |
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Hi,
Definitely pursue the "red ear' thing. But also know that every disease has individual differences.
About laying down -- my attacks almost always happen during sleep. Also, the pattern changes a little bit every year, and every few years there are fairly large changes. My head gets hot during attacks. I'm pretty sure it is from the dilated blood vessels. When do your attacks occur? How much verapamil are you taking now?
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