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04/10/2012 07:29 PM

The short version of my story

summom11
Posts: 8
New Member

In 2008, I was diagnosed with chronic fatigue, fibromyalgia, and IBS. If those weren't fun enough already, I got a sinus infection headache on September 19, 2010 that never went away.

I barely remember the first six months of the headache from all the medicines that had been tried coupled with a 3 day hospital stay. The first neurologist told me that I was a pain medicine addict and until I came to terms with it I wouldn't get better. Over a year later, I stay within or under 2 doses of pain medicine or triptans a week and still have it. Guess he was wrong. Funny things is he thought if you couldn't cure it with Tylenol your an addict since it cures his "migraines". Needless to say, I never went back to him.

I found the only relief I get is passed out/asleep or too drugged to care. I managed to cross off all the blood pressure medicines as preventives with one major interaction causing my blood pressure to drop too low. I think they dais the next one they were going to put my on was depakote. At one point I was on 3 preventives at the same time. I know its trial and error but it gets frustrating finding the right one.

I'm still learning to cope with the changes I have had to make so I can function. I missed alot of my kids' (4 and 9) activities because of the pain or a new procedure to try. I used to take for granted all the things I could do before. It seems to get easier as each day passes.

I hope my medicine will get figured out. I know I haven't tried them all... yet. I lost track at 40 different ones to prevent or treat it. And I am sure I will keep trying alternative methods too. Acupuncture can't be that bad after nerve block in my head and neck. I'm just taking it one day at a time.

Post edited by: summom11, at: 04/10/2012 07:47 PM

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04/10/2012 08:16 PM
tortoisegirl
tortoisegirlPosts: 3247
Group Leader

Welcome! Glad you posted an intro. Thanks for sharing with us. Glad you got to try an in patient treatment (a lot of us including myself don't get this option), but sorry to read it didn't break the headache. Yeah I've had some ridiculous doctors too...such as the one who refused to treat me further until I saw a therapist (thought it was all in my head since I failed a couple treatments). I also have fibro and IBS, but everything else I have started after the headache...it was the first of what me and my doctors think is some sort of auto immune thing I have going on.

Agree the preventatives are a huge trial and error. Make sure your doctors are giving you long enough on them, as some take up to 3+ months to thoroughly test. A anti seizure & anti depressant combo is pretty popular with a lot of neuros. There is also some of the newer anecdotal evidence for off the wall meds like Namenda, Seroquel, and Flunarazine.

Look into Lyme and how to see a Lyme literate doctor and get an accurate blood test for it and co-infections. Down the road, you may want to look into an occipital nerve stimulator with suborbital leads (Dr. Reed is one who does these) or occipital nerve decompression surgery (Dr. Blake & Dr. Perry do this), but I'm not even ready for that after 6.5 years.

I think the best bets for alternative treatments are physical therapy, massage (especially myofascial release), and Botox injections. Acupuncture is one of the last on my wish. I recommend to stay away from chiro as I haven't heard much of anything good, and too many bad stories (although I did recently see a NUCCA specialist as only very mild upper cervical adjustments are made...no help for me with 6 visits). Everyone is so different though. Massage helps my neck but not my head. I resorted to daily narcotics a few years ago. A last resort, but they've helped. I didn't have much of luck with any preventatives so far, but most of us do find something to help. Best wishes.


04/10/2012 08:17 PM
MaryR
MaryR  
Posts: 4122
Group Leader

Hi Sunmom, It does seem that chronic headaches either bring out the best or the worst in doctors. When it is clear that you will not be able to work together the best thing you can do is to move on and find someone better.

Have any of the preventatives made a difference at all? I know I don't have anything that can stop the pain, but I have been lucky enough to find some preventatives that take the edge off it. Not everyone manages that, and I imagine it is a bit more complicated since you have other medical conditions to deal with.

I don't know if you have ever looked into lyme's disease, but there have been some members here who had some of the same symptoms as you and theirs turned out to be lyme. It isn't an easy thing to find out if you have had it for a long time (there is controversy about chronic lyme, whether it exists and how to treat it) but after getting treated for lyme some of them are now headache free and doing better with their other symptoms too.

Whatever is going on, I do hope that you will find things that help, whether meds, alternative treatments, or even little things that make coping a bit easier, it can all add up. I too find that I have gotten better at dealing with the headache over time (I am at nearly 6 years now).


04/11/2012 07:43 AM
summom11
Posts: 8
New Member

Thank you for the advice. I will check into some of these things. I going to talk to my doctor about these things. I appreciate the insight.

04/11/2012 11:32 AM
KathCA
 
Posts: 50
Member

I second Kate's suggestion to look into Lyme. There is a lot of research about CFS and Fibro having underlying viral or bacterial infections.

Have you tried a neti-pot or Nasaline rinse? (Sorry if you mentioned and I missed it.) My daughter's specialist has her do the Nasaline daily because she has so much bacteria in her sinuses.

My daughter had her constant headache for 18 months before a doctor figured out she has Lyme. We are now working with a specialist that's treating her not only for Lyme, but for all sorts of toxins and infections. She's slowly improving, which is good. I just want her to get her life "back."

So sorry for what you're going through. You're definitely not alone, which still amazes me. How can so many people have constant headaches that nothing helps?

Best wishes,

Katherine

Post edited by: KathCA, at: 04/11/2012 11:33 AM


04/11/2012 08:39 PM
tortoisegirl
tortoisegirlPosts: 3247
Group Leader

FYI your doctor typically will do the typical blood test for Lyme which is very inaccurate and doesn't check for co-infections (ie. not even worth your time). Unfortunately there is a big difference between the accepted method by the medical community and what has been found true in the Lyme literate community. For example, its commonly thought that you have to have a tick bite or rash or have been in CT or something to get Lyme. There are some good posts on this board and the Lyme board if you want to read up on how to educate yourself on the issue. From there you can judge how much effort to put into it. Many of the Lyme literate MDs unfortunately don't take insurance. Best wishes.

04/13/2012 04:55 PM
Enbee
EnbeePosts: 1556
Senior Member

Hi and welcome! It does sound like your first doctor was an idiot. I've come across doctors like that all too often, unfortunately. I hate people who assume that if they have had a migraine and something fixed it then that is what everyone needs to do. I was once at a baby shower and this woman I didn't know told me that she 'cured' her migraines by drinking a glass of water before bed every night. Apparently my problem was that I hadn't been doing that. Seriously, I nearly hit her!

It sounds like you have tried a lot of meds but it is very hard to find the right dose and combo. I also had issues with the blood pressure meds making my BP too low and causing me to faint all the time. I also have underlying CFS so we do have some similarities.

A good idea to look into the lyme aspect. We can also suggest some other meds to look into if you want to list all the meds you've tried (I know it is probably a long list, but any you can remember might be helpful).


04/13/2012 05:21 PM
leitheij
leitheij  
Posts: 115
Member

Enbee.. I am laughing at your water story. Don't you love it when people think they know what will 'cure' us. My favorite question is.. doesn't just taking a tylenol help?!

I'm also commenting on your response about blood pressure meds make your BP too low. This is probably off of the forum topic but I am seriously going through that right now. I was put on corgard (beta blocker...the third one I've tried) and I can barely get off the couch without feeling like I'm going to faint. It is also my menstrual period so that could have something to do with it.

Post edited by: leitheij, at: 04/13/2012 05:24 PM


04/13/2012 08:46 PM
Enbee
EnbeePosts: 1556
Senior Member

It is a funny story now but at the time I was less than impressed. I was in mega pain that day being out somewhere really noisy and bright. I hadn't bought up my headache but I think someone else mentioned it to her and then everyone who had ever had a 'migraine' had to put their 2 cents worth in...... gah! People really don't get that not even strong painkillers touch it, so tylenol does jack...

Sorry to hear about your BP. You probably need to go off the meds that are affecting it (unless it is actually helping your pain). My BP was regularly going down to 70/40 which is way low and I couldn't do anything. I was being treated in hospital at one point (DHE infusions) and the registrar was very concerned about my BP and rang my neuro and told him he had to stop the medication. I'd previously told my neuro but he didn't think it was much of a problem. I should mention this is a former neuro, I moved on from him, partly because he wasn't that responsive to issues like this.


04/14/2012 12:35 AM
summom11
Posts: 8
New Member

Here are the preventatives that I can remember being on. Many of these overlapped eash other. Sorry for the spelling

Topamax

Gapapentin

Amitripylen

Celexa

Inderal

Tizanidine

Magnesium

Zoloft

I also had had drug interactions with Cymbalta and effexor when they were trying to manage my fibro so they wont try them again

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