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TryingToBeStrong
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Need Advice
« on: Oct 11th, 2006, 5:06pm » |
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Greetings Everyone.
I'm new to this site, and this is my first post.
My boyfriend and I have been living together for about a year and a half, and (after a painful couple of months) he was finally diagnosed with "A-typical Chronic Cluster Headaches" in August. Since then, we just take it one day at a time. He hasn't even been able to work in three months. They are chronic, and never go away.
Before he was diagnosed, the doctors were prescribing medicines on the level of Stadol to combat the pain. Consequently, he has no recollection of the entire month of July. On top of the headaches, he's also dealing with EXTREME insomnia, according to the specialist, uber-high blood pressure and a damaged heart due to meds he had to be on as a kid.
He's young (we're young). He's 26 and in fantastic shape (he was a swimmer and gymnast for years, and has retained the physique.) It just seems like the CH came out of nowhere.
I wish I had the words to explain how heart-wrenching it is to see him suffer – to watch him day by day with no progress or hope – to sit by helplessly as the person I love more than anything in this world suffers so intensely. I need a light at the end of the tunnel. I feel like I'm losing hope.
I guess I just needed a place to vent, and people to listen who understand what I'm saying. I'm always supportive of him, and have had to take off work quite a bit to take him to doc appointments, spinal taps, MRIs, CAT Scans, and he's had two week-long hospital stays. And, people I work with just don't get it. They say "So, he has a headache?" And I want to scream! "No! it's not just a headache!" How do you explain this to co-workers and friends?
Sorry for the long post. I promise to be less random and shorter-winded in the future.
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LeLimey
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Re: Need Advice
« Reply #1 on: Oct 11th, 2006, 5:29pm » |
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Oh please don't ever try to say less, say what you need. Thats what we're here for, to listen, help and be strong for each other.
This is such a lot for you to have to deal with and I know how tough it is on you too.
I'm a chronic sufferer but I'm also a supporter for another family member with CH so I know the pain from both sides.
First off lets try some practical help for you.
Stadol etc are like throwing candy at a shark. They are, quite simply the wrong sort of pain relief.
CH means the blood vessels on the affected side of his head swell by up to 20x their normal size. Thats why they are so excruciating. What we need are vaso constrictors to get them back down asap and stop the pain. The only drugs that will do this are triptans and specifically Imitrex, also called Sunatriptan in an auto injector. The tablets do not work fast enough, do not be fobbed off. They take up to two hours to kick in and then have a half life of two hours so they are about as much good as a cloth crash helmet! (Techincal term don't you know?!)
Zomig or Zolmitriptan is another good option. That takes up to twenty minutes to kick in, usually about 10 though but it has a half life of twelve hours so it will protect you from further hits for that long so its a good option.
Frovatriptan is a tablet. For individual hits it is, quite simply, crap! However with a half life of up to 26 hours its a very good option for getting through an important day or getting a good nights sleep.
Your boyfriend needs to look into preventatives with his neuro. Verapamil is considered front line defence against CH and teamed with a prednisone taper it can be hugely effective. Have a look on the meds board for more info.
Non med options which can be good while waiting to see docs or when insurance is not there are strong coffee to abort (caffeine is a vaso constrictor) Red Bull or cheaper equivalents (high caffeine with taurine which enhances the effect of the caffeine. Sort of like viagra for caffeine!) Ice or heat and my favourite abortive of all time, Oxygen breathed through a non rebreather mask at 15 LPM. I can abort a hit in less than ten minutes using O2. I love it.
Another non med option you might want to research on here also is Kudzu which has been very effective for alot of people.
We will be here for both of you whenever you need us. Don't ever be afraid to vent, ask for help or ask questions. Please feel comfortable using all the boards. You have a lot of reading to do and it does get overwhelming so please ask all you want okay?
Oh and welcome! I'm sorry you have had to find us but I'm very glad you did as there is no better place for a ch'er and a supporter to be. Thank YOU for all you do, it means alot to us.
Take care of you both
Helen
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Daddys_Devil
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Hey girl. I'm 14 and a supporter of three(not including everyone else here). My dad has had CH (nik name for cluster headachs) since I was about 7. My stepmom also suffers along with my best friend. And I suffer from migrains myself. Don't worry about typying long posts; everyone here does it. There's a lot of good people here. Listen to them and you'll be just fine. If you need a shoulder to cry on or an ear to listen just send me a PM. I'm always around. I don't know much about meds but if you want to talk let me know. Hang in there hun. Keep your chin up and you'll get through it together.
Always,
Felicia 
P.S. Listen to Helen. She knows what she's talking about.
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| « Last Edit: Oct 11th, 2006, 5:32pm by devilsdaughter » |
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TryingToBeStrong
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Re: Need Advice
« Reply #3 on: Oct 11th, 2006, 5:41pm » |
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Thanks for the repiles!! Y'all (I'm from Texas) are fast.
Sorry if I was mis-leading. He [/i]was [i] on Stadol before he was diagnosed. Now, our main abortive is Zomig. He was on Imitrex for a while, but after a trip to the hospital the doctors said that it was triggering 'rebound' headaches, in other words, the Imitrex would knock the ch down for a bit, but it would just bounce back even stronger.
He had a lumbar puncture today and the doc said that the fluid pressure in his head was at 360, and it should be no higher than 200. Does anyone know anything about what that means?
Thank you so much for the suggestions on Kudzu and other meds/options. Since I go to all his appointments with him, I will run some of those by his docs.
I am so happy this board is here. It's comforting to know that there are people who can truly empathize with the things I'm dealing with. Even the best of my friends don't "get it," though they try to be supportive of me.
Again thanks so much. I feel like I'm making friends. You all are wonderful.
P.S. What is a PM?
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Linda_Howell
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Re: Need Advice
« Reply #4 on: Oct 11th, 2006, 5:48pm » |
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A PM means "personal Message" that no one but you and whoever wrote it can see.
Look under my name on this post and there is a little envelope. One has my e-mail address on it and the other says Instant or Personal message. If you click on it you could send me a note. Now if you look up and on the right of where it says "MESSAGE BOARDS" you will see:
Hey! trying to be strong, you have 1 message. Click on that and you're there.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Jackie
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Re: Need Advice
« Reply #5 on: Oct 11th, 2006, 7:21pm » |
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Hi Sweetie....glad you found us. This is a great group of people and they'll hang with you all.
I'm married to a clusterhead. He was a chronic for 15 years. He's been pain free for months now...see, there is a light at the end. Had we found this board sooner, I bet it wouldn't have taken so long.....there's a ton on information here and these people are smart.
Study as much as you can...you'll be his best line of defense. CHers get worn out so you'll need to hang tough.
Someone is here all the time.....you all are not alone.
Ask questions....Ask for help....rant, rave and cuss if you have to...we'll be here.
Keep us posted...
Big hugs,
Jackie
edited....'cause I can't spell my own name...duh!
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| « Last Edit: Oct 11th, 2006, 7:43pm by Jackie » |
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tracyboo
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Re: Need Advice
« Reply #6 on: Oct 11th, 2006, 9:51pm » |
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I just wanted to say this is the best group of people I have ever not met.  Everyone, no matter what they themselves are going thru are always willing to give you pep talk and give you hope when you think there is none. They are full of ideas and lots of experience. Personally, I don't know where I'd be without them.
Everytime I read a post like this, from someone in the same boat as me, I break out into tears. It is such a horrible thing to go thru. Especially when there isn't anyone that you immediately know that understands. Even my hubby thinks he's hopeless.
Anyway, although I'm still a newbie here and learning things from everyone else, I'm also here to vent to. Feel free to PM me also! That goes for any of you wonderful people.
Luv and Hugs to everyone! 
Tracy
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TryingToBeStrong
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Re: Need Advice
« Reply #7 on: Oct 12th, 2006, 10:32am » |
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I can't tell you how wonderful you all are. It's been a long and lonely three months, and in one day I suddenly don't feel alone anymore. Thank you.
I don't know if I'm at my wits-end and emotional, or what but while reading these replies at work yesterday, I found myself tearing up. Emotional, happy tears. Finally, people who understand the things I (we) deal with.
Thanks! Hugs and hope to you all!
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Lizzie2
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Re: Need Advice
« Reply #8 on: Oct 13th, 2006, 8:26pm » |
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Hi there Trying to be Strong,
I was just directed to this thread by another CH'er, and I thought I'd see if I could add any more information to help.
First off, I do have a question. I see above that you said his clusters are chronic "and never go away." Does that mean that he never has any time without a headache? If so, does he have one headache that's there all the time, and then periods throughout the day where it gets much worse for 45-90 minutes or so? In general, clusters go completely away or a lot of people here have a low level constant pain between hits, or so I've been told. I'm an exception because I have a few headache types - I have a constant chronic migraine but with chronic cluster, too - so if it were me saying this, I don't have any time without a headache. However, I do have times when the clusters distinctly come and then go away...those attacks rise above the baseline of my daily headache. Just curious if you can explain any further about the headaches never going away!
And then, with respect to the spinal tap... I'm a bit surprised that they did not opt to give him any treatment for his elevated CSF (Cerebral Spinal Fluid) pressure - as they did not, if I'm reading you correctly? I know treatments can vary, but a lot of docs will give some sort of treatment if the pressure goes above 220mm H2O.
There is actually an entire headache type that is diagnosed in part by a patient having an elevated CSF pressure. This type of headache is called Benign (or Idiopathic) Intracranial Hypertension (and sometimes called Pseudotumor Cerebri). Here is a link to info on this: http://www.emedicine.com/oph/topic190.htm There are treatments for this, and diagnosing it really is step 1. I know people who have had this, so if this ends up being the case for him, I could point you to a few other resources!
There are other causes for elevated CSF pressure, but with respect to a primary headache, the BIH is the most common. Elevated CSF is not a symptom of cluster headaches, HOWEVER - this does not mean he does not have cluster headaches. Many of us have several different headache types, so it is important to truly explore all avenues.
Has he been to a headache specialist yet or just a primary doc or general neurologist? There are many headache specialists out there, but you do have to know where to look to find a reputable one!
Hang in there, and if there is anything we can do, please ask! Just know we're here, and I'm glad you found a site where you can feel supported - no matter what! I definitely hope that you all find something that can help him. It is so frustrating to not know what is going on or not know how to fix it....
Take care!
Carrie
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dreamoore13
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Re: Need Advice
« Reply #9 on: Oct 14th, 2006, 7:00pm » |
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Hello,
I've been looking at this site a lot lately.
My boyfriend, 27, has just recently started getting cluster-headaches. It's horrible to watch. I get migraines a couple of times every year, but nothing like what he goes through.
I'm a "fix-it" person and it drives me nuts that nothing is working yet. He's afraid to sleep because that's when the worst one usually hits. So he has anti-anxiety meds to help him sleep, and anti-seizure meds to try to scale back the headaches, and then Xanax for when they really hit. However, sometimes they work and other times they don't . He went 2 days recently without getting one. He was sooo excited, thinking they were gone. And then, BAM, two back-to-back. All his hope just got crushed.
He also gets really depressed and has talked about not wanting to have to live with the headaches if they don't go away. After much effort on my part, he now speaks to a doctor about the depression, but it still hurts me to see him so low.
I'm very glad you posted your message, because I understand where you are coming from. So, I decided to post to let you know that I appreciate your comments.
Thank you,
Andrea
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TryingToBeStrong
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Re: Need Advice
« Reply #10 on: Oct 16th, 2006, 4:34pm » |
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Hi Carrie-
Thanks for the reply! Sorry it took me so long to get back on here
As far as "never going away," it is constant. I have noticed that there are periods of time that seem less intense than others. During these 'down times,' he can focus enough to have a conversation or even watch TV, but the pain is still there. He has a neurologist, pain specialist, sleep doctor/psychologist, and general physician. I know that the neurologist is top-notch, it was hard to get into see her, but fortunately we had someone get us in.
As far as the spinal tap goes... they did relieve the pressure, and he is scheduled for another one to check again next week. We're still waiting on results from the spinal fluid analysis. Thanks for the heads-up on the hypertension headaches relating to this. I will definitely research that site. One of his doctors has implemented Botox treatments. They inject it all over his head around the muscle groups. This helped a bit the first time (12 weeks ago), but his last session made no improvements.
Thanks SOOO much for the advice, and sorry that my original posts were confusing. I've read on here that Kudzu can be effective. How would one go about finding Kudzu?
Thanks again!
Andrea -
Thanks for your comments. It is nice to know that others are going through this too. I do think that depression can take ahold of them. And, it's just absolutely heart wrenching to watch him suffer. He's developed red rings around his eyes that are always there. Not red from crying, but it's almost as if someone took a lip-liner pencil and lined his eyes with it. It's as if I can actually see the pain in his eyes.
Hang in there! I'm learning that we're all they have, and they need us!
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BB
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Re: Need Advice
« Reply #11 on: Oct 16th, 2006, 9:03pm » |
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Hello
First let me give you a great big hug! and please hang tough, he needs you to be strong right now.
I am a supporter for my husband plus all of my new friends here. This is his first diagnosed cycle and it has been really tough as we are still going through the mills with various tests and trials of meds just like you are. Its always the unknowns that are frightening.
This is when and how the people here can be of so much help. We would see something new and panic and rush here asking a million questions , then someone would come forward and tell us its normal, part of CH, it will be ok and suddenly the fear is gone. So please do ask, whenever and whatever, no matter how big or small the question maybe, even when its just a " I wonder " in your mind. This is how we put our mind at rest and our soul will find peace and love in the support received and given.
I know all so well the feelings of helplessness. I combat that by doing little things for my man. Such as giving him a neck rub, fetch him some ice, wash him a new face towel, look for a new coffee bean type, make sure he always has a few cans of Red bull chilled cold in the fridge etc, little things that have no name but a hell of a lot of meaning
I used to look for the light at the end of the tunnel. Now I dont strain my eyes any more, I just KNOW that it is there. Instead I concentrate on walking the tunnel alongside my husband and have even learnt to enjoy the walk together. As long as we have one another, it doesnt matter if we are in a tunnel and if the tunnel is dark.
As you walk , you will find many others in the same tunnel, right next to you. We can exchange smiles, greetings, jokes, complaints , whinges, even swear words .....
Remember, reach out and you will never be alone.
Lots of love and painfree wishes to both of you.
Take care .
Annette
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Black_Eyed_Girl
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on Oct 16th, 2006, 4:34pm, TryingToBeStrong wrote:| As far as "never going away," it is constant. I have noticed that there are periods of time that seem less intense than others. During these 'down times,' he can focus enough to have a conversation or even watch TV, but the pain is still there. He has a neurologist, pain specialist, sleep doctor/psychologist, and general physician. I know that the neurologist is top-notch, it was hard to get into see her, but fortunately we had someone get us in. |
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Love, that's not a cluster symptom(as far as I know anyways. Icould be wrong; it's happened before  ). I was talking with my biggest sufferer and he's been doing a lot of research. It sounds to him more like the spinal fluid isn't draining right after it enters the head. It's actually his brain being pushed down on by the fluids that are causing the headache. Have him talk to his doc about this possiblity. If it's not really CH then treating it like it is could be deadly. I know that it's been brought up but I thought it'd be good to have more than one person saying it. If the pain seems to go away at least some what, defiantly think about it. Just my  .
Always,
Felicia
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ti_beach
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Re: Need Advice
« Reply #13 on: Oct 22nd, 2006, 12:16am » |
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I just want to say.........this site helped me in many ways!! My hubby has suffered from CH for many years before I met him. I met him 2 yrs ago, and we were married 1 yr ago. His CH started again, about the time we were married. OMG.....It was terrible!! I thank God for this site!! I don't "talk" much here!!, but I read and learn!! Hugs, and Love! Robin
They can be grouchy MF'ers.....lol....Just BEAR with 'em! 
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