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Cluster Headache Help and Support >> Getting to Know Ya >> Diagnosed yesterday with CH's - what a day! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1369858453 Message started by lizardqueen420 on May 29th, 2013 at 4:14pm |
Title: Diagnosed yesterday with CH's - what a day! Post by lizardqueen420 on May 29th, 2013 at 4:14pm
What a ride; I just got diagnosed yesterday with my CH's and they are absolutely the worst thing ever imaginable to man. I could just curl up and die after scratching my eyeballs out.
Symptoms: woken up 3 times now from a dead sleep. I stop and wonder 'why am I awake' and then it starts, the constant ice-pick stabbing in the back of my eyeballs. The tears that roll without me crying from the pressure in my head, the moaning/groaning and incessant rocking back/forth for ANY relief. Nothing helps and nothing works! My peripheral vision swims/dances/waves/rocks/blurs. I do get nausea though which is not typical of Clusters - not sure what's up with that one. Started: about 4 weeks ago. Uncontrollable and constant. Medical History: 3 months ago I had a major bunion repair surgery in my left foot. First 6 weeks were no weight-bearing which meant lying down elevating the foot for fast healing. And, then onto partial weight-bearing with an aircast thus I have an improper walking gait. I'm onto full weight-bearing now but still obviously have the improper gait. This has all affected my back, neck and shoulders. The doctor at the ER yesterday said that I have all the headaches; tension, migraine and clusters. Possibly these CH's are due to the fact of this surgery that often people present with these type of symptoms after a major stress change in their life. It may become Chronic or they may subside after I am up and about after full healing of the foot takes place. What has helped me: coffee helped during the day. A shower for 15 - 30 minutes. Dilaudid at night but not allowed that anymore due to that is for my foot not my headaches. Yesterday at the ER through the IV line an anti-inflammatory Ketorolac did not help; but what did was a syringe and a half full of morphine, gravol and a prednisone. So went to my family doctor today as the ER did not give me any medications to go home with only told me to come back for the Oxygen after an attack. My family doc gave me the abortive pills Sumatriptan and preventatives Amitriptyline - so far an hour after taking the Sumatriptan I have found a little relief but I can tell I will need another one in my 2 hour window. So after reading this guys, do you have any advice for me? Any other tips that might help out during an attack or directly after. I was so scared to fall back asleep after my night attack last time that I only ended up having 2 hours of sleep in total and being a zombie since then. Last night I slept through the whole night thinking before I fell asleep that I was going to wake up, but it didn't happen - thank god! So, I am dreading the day it happens again. Please, any responses will be soo helpful! Any thoughts and opinions are welcome as well. |
Title: Re: Diagnosed yesterday with CH's - what a day! Post by Mike NZ on May 29th, 2013 at 10:13pm
Hi Lizardqueen and welcome
That is quite a complicated medical history you've got, especially with the multiple headache types all starting at once. Since there is the apparent connection between the foot surgery and the headaches it is easy to assume that they must all be connected. However CHs do not seem to normally start as a result of things like walking out of balance. However it is equally possible that your CHs started totally independently. There are also multiple other causes of CH like symptoms, some of which need urgent medical treatment. And yet the comment about wanting to die after scratching your eyeballs out is a strong pointer towards CH. What you really need to do is to work with a headache specialist to try to work out what mixture of headache types you have and what their cause is. From the drugs that you've been given so far, a mixture of narcotic pain killers, IV prednisione and sumatriptan pills it seems that the ER doctor does not have a great depth of knowledge around treating CHs. You are clearly in a lot of pain (and we all know what that is like), so you need to work with suitably skilled and experienced doctors to work out what is going on and what the right treatment(s) need to be. For CH, the normal treatments are a preventive, something like verapamil, lithium or topomax, which should cut down the number of CHs, plus abortives to kill off the CH, with oxygen and injectable imitrex (sumatriptan) being good for this, taken as soon as possible after the CH starts (not obtainable after going to ER as the delay will make the oxygen much less useful and it isn't really safe to drive with a CH). Pain Killers are not really an effective treatment in the vast majority of cases for CH. Similarly for migraines, once they are very frequent you can take preventives. And there are abortives available, like sumatriptans (injectable, nasal and tablets), Maxalt melts, etc., to kill off the migraine. Pain killers can be effective with migraines, however if taken too often they will result in rebound headaches. For other headache types there are other treatments which whilst some will overlap with CH / migraines, some will be headache type specific. Find out more and let us know what you find out. Keep asking questions too as whilst we are most clued up around CH, many also have other headache types too. |
Title: Re: Diagnosed yesterday with CH's - what a day! Post by wimsey1 on May 30th, 2013 at 7:59am
I want to underscore the above, and add that if you make another trip to the ER, be clear it may be too late for the O2 to work, particularly as the hospitals tend to provide it in a form that is unsuitable to our needs. You generally are given a nasal canula which is worthless. We need direct high flow O2 (minimum of 15lpm) delivered to a nonrebreather mask as early in the attack as is possible. The longer we wait, and the harder the attack, the longer it seems to be for the O2 to take effect. Efficient aborts can be had with the above setup, especially when you add an energy drink to the mix right off. Good luck and God bless. lance
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Title: Re: Diagnosed yesterday with CH's - what a day! Post by lizardqueen420 on May 30th, 2013 at 9:51am
Hey Guys,
Thanks for the responses. In a world where most people don't understand CH's it's nice to be understood and not feel alienated. So if it makes a difference at all I live in BC, Canada in fact Abbotsford which in the Fraser Valley has the poorest air quality in BC - would that make a difference to these types of headaches? More specifically to the Cluster Headaches? I'm really not surprised that either of the doctors were 'up' to latest diagnostic measures for these types of headaches. Like I said yesterday in my post, the Sumatriptan tablet/s did not make much difference and in fact later that evening the headache progressively got worse but since the ER and the prednisone I have not had an 'Ice Pick' episode. Just the aggravating headache that will not go away and I swear can turn into the dreaded 'Ice Pick' at anytime. Level stays at around a constant 4 for the last 2 days now. So my family doctor said that I was to try this regiment for 2 weeks and I go back to see her. If it's not working then she makes the referral to the Neurologist for me where I have no choice of doctor I see, the doctors pick for us in Canada. My one problem is I HATE anti-depressants. They generally make you more depressed and because I have been doing some research on CHs I don't and didn't take them yesterday as my preventative. Can anyone tell me if the Amitriptylines actually help for the CHs? Also, does anyone have an idea why the Triptan medications wouldn't be working at all either? My husband suffers from Migraines and has had Zolmitriptan which I have taken once before and again, I had to take 2 for a little bit of relief - to have an 'Ice Pick' that night. I've seen the Vitamin D regiment. Funny enough I also have Celiac Disease and one of the regiments I follow for this Autoimmune Disease is 5,000 IU's of Vit D and 2,000 of Fish Oil daily - I have been on this for well over 4 years now. Maybe why my CHs are held at bay? I also vaporize Medical Marijuana due to Celiac disease and so really I don't find that works for me either as I am so used to it, although it's way worse if I smoke pot instead of vaping. Do you think that I should up my intake of Vitamin D or will the Neurologist see to that, I mean my levels are going to be great with the regiment I have been on. Just want to know if it would make that much difference? I did talk to my doctor about the Oxygen and she didn't seem to knowledgeable about it as well as seeing when you are suppose to take the O2, like you guys say the ER doctor didn't seem to up to date either. He was young and didn't hesitate to give a female in her late 30's the diagnosis though. I think one of the most frustrating things for me is that I never suffered from headaches until now. Will it be the Neurologist that will make sense of this for me? And, the massages that I am getting are they worth it or not (I got an 'Ice Pick' the same night of my first massage)? Well I will await, patiently for a response and Thanks again for the quick replies. Much appreciated! Nice to be here. |
Title: Re: Diagnosed yesterday with CH's - what a day! Post by Batch on May 30th, 2013 at 11:17am
Have you had a lab test for your 25(OH)D serum levels?
Our experience with the anti-inflammatory regimen and discussions with one of the nation's top endocrinologists specializing in vitamin D3 therapy indicate 5,000 IU/day vitamin D3 results in an average 25(OH)D serum concentration of 60 ng/mL. A compilation of data collected here at CH.com and from an online survey of CH'ers using this regimen indicate CH'ers who experienced a pain free response to this regimen averaged a 25(OH)D serum concentration of 82 ng/mL. Bottom line... 5,000 IU/day vitamin D3 may not be sufficient to prevent your headaches. Ask the physician treating your celiac disease about the 25(OH)D lab test and increasing your vitamin D3 dose to 10,000 IU/day. Vitamin D3 cofactors, magnesium, zinc, boron and vitamin A (retinol) are essential for optimum vitamin D3 metabolism. A Centrum Silver multi-vitamin/mineral pill a day will meet most of these requirements although adding 200-400 mg/day magnesium (magnesium glycinate or magnesium citrate) may help even more. Take care and hang in there. V/R, Batch |
Title: Re: Diagnosed yesterday with CH's - what a day! Post by Bob Johnson on May 30th, 2013 at 12:24pm
Why your information re. residence is important: We don't know how to advise you to "work" your health care system; you're, I assume, some distance from a larger urban area where a specialist is available. So sources of skilled care appear to be restricted, unless you search and find some options.
IF the neurologists up your way are as poorly trained in headache as in the U.S., this referral won't help. You CAN be assertive and talk both to your primary care and to the neurologist and directly ask about his training/experience before going for your first appointment. It would be a waste of time (and your pain) to not coinfirm his knowedge. IF it turns out that you have no viable options re. docs (and a number of us have followed this route) ask your current doc if he is open to receiving MEDICAL material which we can supply, from which he could learn how to treat you. IF his ego is open, this an be a successful option. If this door is closed, ask your medical authories if you have the option to move to the speciality care you need, by passing a neurologist (unless you can confirm his qualifications IN HEADACHE.) [In England, for example, you have the right, in law, to by-pass local health care and move directly to a headache clinic.] Lastly, at this point, you don't have a solid diagnosis of Cluster. Starting to treat youself can suppress the pain without treating the underlying disorder: not wise! Hence, the need for an expert Dx. (See: Link to: cluster-LIKE headache: Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache") |
Title: Re: Diagnosed yesterday with CH's - what a day! Post by Cupper on May 30th, 2013 at 11:14pm
Your Life as you knew it is about to change. This isn't an easy change, best of luck. To all as well. Peace
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Title: Re: Diagnosed yesterday with CH's - what a day! Post by lizardqueen420 on May 31st, 2013 at 12:05am
So, I have another update for all. I was back at the ER today like I was supposed to, sat there for over 2 hours in agony before they called me to a 'room'. After telling them about Tuesdays affair they still did not hook me up to the O2 but at this point I am beyond arguing, I'm exhausted from this everyday headache. I was able to keep my ice pick at a 8 but only with the help of the shower, even at the ER nothing was working until they shot me up with Dilaudid.
The benefit I got from the ER today was that I had a CT scan of the head, which was good and normal. Blood work was normal. The highlight was seeing a Neurologist and guess what? They are NOT CH's but migraines. He did not address the 'ice pick symptoms' and kind of shrugged it off, this has me alarmed a bit so I will do a bit on my own. Like up my Vitamin D levels, take calcium supplements but as for the minerals I juice everyday 2 times a day and that has my minerals/nutrients. I am on Topomax and if I have to I can take my narcotics as Dilaudids seem to work for me. I am not sure if I am happy with this diagnosis but I do go back to my family doctor on the 12th of June and I can discuss things with her there. Maybe I would like and should have a second opinion, especially if I get more 'ice picks'. Let me know your thoughts and thanks to everyone for the responses. Hopefully one day I will be able to contribute as you do and as knowledgeably. Cheers! |
Title: Re: Diagnosed yesterday with CH's - what a day! Post by Guiseppi on May 31st, 2013 at 8:10am
Was the neuro you saw a headache specialist neuro? I ask because being a woman, the knee jerk reaction amongst the older doctors is "It must be migrains because women don't get cluster headaches." The diagnosis criteria from the 80's is almost funny....."CH patients are primarily male, above average height with lionesque features!!!!"
I am not saying he did not make a correct diagnosis, I am certainly not a doctor and am not qualified to diagnose. But I've read way too many horror stories on this board of women being treated as migrainers for years before a competent "Headache Speecilaist neuro" correctly diagnosed them as CH. Joe |
Title: Re: Diagnosed yesterday with CH's - what a day! Post by lizardqueen420 on May 31st, 2013 at 12:06pm
I did some research on the computer about the Neurologist and it doesn't look like he does specialize in Headaches. So, I do believe that my next appointment with my family doctor I will ask if I could get to see a Headache specialist. I am beginning to think that I do have multiple headaches; that I get Cluster headaches along with migraines.
I don't know how long it takes for the Topomax to start working within a body but hopefully it doesn't take too long and I get some relief. Either way, I'll just drown myself in the shower as that is about the only thing that helps to bring down the Ice Pick stabbings to a more tolerable level of pain, that is still intense. |
Title: Re: Diagnosed yesterday with CH's - what a day! Post by lizardqueen420 on May 31st, 2013 at 3:16pm
I've also been left a little confused in what to do abortively. Topamax for preventative once a day and they did say that although they don't like narcotics but because I have them I can use them once in awhile, so I am to use my percocets for abortive measures? That is what I am trying right now along with a Ketolorac - didn't work in the ER but I have them here and maybe long term use will finally bring some head swelling down.
Everyday is the same. A headache - I hate this already. It brings me to tears daily, feel like a little girl with no pain tolerance and I thought I had a pretty good tolerance but it turns out I don't. |
Title: Re: Diagnosed yesterday with CH's - what a day! Post by lizardqueen420 on Jun 2nd, 2013 at 10:47am
For someone who can't have sugary drinks, the fructose bothers my stomach (allergy) what can I have for energy drinks? I've been suffering daily. I'm trying different things. Today I took a Sumatriptan tablet upon awakening this morning and all I am is tired with a headache, what am I doing wrong? June 12 is a long time away? Anyone any suggestions that I can try until then? I may go out on a limb today and try an energy drink but I may get a worse headache due to the fructose in it - which scares me. I have low level 6 Cluster headaches with a constant migraine (I think) or tension - I'm beyond confused already. I am keeping a headache diary but that seems all over the place and my head feels fuzzy so I don't make sense of anything anymore. >:( :o
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Title: Re: Diagnosed yesterday with CH's - what a day! Post by Mike NZ on Jun 2nd, 2013 at 7:46pm lizardqueen420 wrote on Jun 2nd, 2013 at 10:47am:
There are sugar free energy drinks available. I've seen a few people here post that they use the sugar free Red Bull with good results. |
Title: Re: Diagnosed yesterday with CH's - what a day! Post by repguy2020 on Jun 6th, 2013 at 6:15am
Just a couple of things to chew on. First women have a higher pain threshold than men. Most women who have had both would pick child-birth over kidney stones and kidney stones over cluster headaches. The pain is intense and irrational. You have no need of shame for feeling pain which brings most people to their toes, while banging their head.
Also, you're among friends now. We might not be right there with you, but we certainly understand the pain you're in and the ride you're on, although some of the details may be different. There is a lot of good information here and there's almost always someone on the site who understands and can respond to a post when you need a lift. Good luck wrestling The Beast. rep |
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