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narcolepsy, fibro, cluster migraines and another sleep disorder .... apnea..ish ... hypoxia?? and AD

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Posted 4/30/2014 1:11 AM (GMT 0)
Ok so long history of sleep disorders . Terrors till bout 10 says mom narco as long as I can remember (no catoplexy thank god) corse it wasnt diagnosed and i thought i was nuts till about 3 years ago. Then bedwetting till 18. Pstd allergies bad as a kid and asthma. Grew out of that and most of the allergies.ADD and anxiety since about prob puberty also when the hypnogogick hal. started. Gee wonder why ... lol sleep dropped to nout 2 hrs a night and the nightmares got bad. Getting up was almost not possable. Dad turned the mattress over one morning with me on it .... i fell asleep.. sort of .. under it. Slept thru classes and not by choice. Driving more then 15 mins meant battling sleeping at the wheel. Bout 10 years ago i got on lexapro for anxiety and depretion .... as a byproduct ... no more nightmares or hypnogogic hal. Bout didnt know why but when i stopped once dueto a lack of funds they came back within a week. Been on eveer since.

This all stayed constent till about 3 years ago. I started g4tting pain. First noticed it in my hands. Then a simple injury to afinger took 3 monthes to stop hurting without any damage that could be found and it was super sensative for a year after that. Started getting weak. By the end i had lost about 50 percent of my strength and endurence without losing muscle or changingthe amount of exercise i did. And it happened quick, it would be bad one day and gone the next. As time went on it got more common and the times it went away ... well those are what went away. The pain was bad but it was more like someone had usex a dimmer zwitch to turn down my tolerence. My lower legs hurt and feet but any where i had an old injury .. the kind that you feel when it gets cold or you exert yourself ... those hurt incredablie bad. My hands where weak and very sensatiive and felt like they where swollen but they where not swollen. Then i started getting confution, foggy like in an all new way. Was messing up at work and getting lost going to work ( worked same place 4 ears prior) then used the gps to get home. Thats when i sought help Fam Doc. Sent me to nuerolagist who sent me to sleep doc who helped with some confusion using a cpap machine and said 99 percent on narco but i was out of money and couldnt get the insurance to pay for the daytime testing thing for it. ...... so no meds. But doc gave me a sample of nuvagil. Wich promptley turned me into a dim bulb walking in even smaller circles. Then said no more till we got the test .... wich i still cant afford. Then sent me back to nuerolagist for pain, who said it was sleep then back to sleep guy who says not sleep back again then to eeg, nurosyke for mem loss wich showed no mem loss ..... really .... then mri then sleep deprived eeg then catscan i think and xrays to clear me for the mri .... 6 times cause they thought i had metal in my head but it was a bug on the lens or dust or something.

Then after all that came back normal wich suprised me on a multitude of levels then an endocronolagist .... i know i spelled that wrong, also normal then on to a rumatolagist who did an exam , blood work and xrays all normal. The last one ruled out fibermialgia because i lacked the normal oversensative spots that go with it. So by this time i was having trouble even walking and picking up a coffee cup hurt my hands. FForgot the migrains ... clusters since at least 19 maybe before but im not sre 2 to 3 bouts a month lasting 2 to 3 days. Started treating with imatrex bout 10 years ago, makes the head stop hurting but as the other pain got worse it would start agitating it. Making it double even triple on a really bad day. Back to the fibro ... fed up i went back the fam practice and got a new doc cause the old one was busy. The guy actually listened to me not looked at his papers and said uhuh while knoding his head ... the guy listened. He asked questions and asked me to try drug treatment as a tool to diagnose the prob since the others failed. I was against it as i have alot of side affects with meds in the past. But i said ok and went on 120 of lyrica 60 for 2 weeks then 120. The 60 worked great the pain was cut in halve the 120 seemed to fix the whole darn thing but agitated the hell out of the narcolepsy. So we added adirol to treat the narco. The stuff kept me going but thr constent ups and downs ***** me out.

So i wasnt in pain without the adderal. But i wanted to be or actually was uncontious most of the time. With it there was no pain but i wanted to choke someone. So we tried symbalta and knocked out the celexa and the addirol. changed from lexapro to celexa bout 5 years ago ... no big changes seemed to work a lil better. Anyways .... cymbalta idnt work for the pain so we added lyrica 50mgs and it heeelped but the cymbalta wasnt getting the anxiety well so back to the lyrica 50,celexa and the addirol again because it helped with the pain quite a bit as it turned out. Ok now it gets a lil .... well wierd i guess. So last year i went to Az. on a trip to see my dad for his aniversery. Was there 4 days and the last 3 i had no pain and almost no memory issuess. By the wqy i lived there till bout 11 or 12 years ago. Came back to Va. and it all came back in about a day. Flash forward to 2 weeks ago and i took a 7 day trip there agin with the whole pack including my wife,8 year old son, a five and a 3 year old daughter. Felt good on arival better the next day then 3rd day got into the hay a lil got all weezy and stuffed up so i took a sudifed. Felt awsome. Brain sharp almost no pain, felt strong agian. But the whole time i was there was migraine after migraine. Imatrex killed em and oddly enough it didnt cause pain elswhere it actually made things better. Really better. No tention or anger i was calm with the kids and patient for about 2 hours then back to normal. . Took bout 1 to 2 a day to fend off the headaches wife and i fought bad the first 3 days then all was well.

The rest of the trip was great. I didnt realize till day 5 that in alll the excitement i hadent taken my meds. Any of them except the celexa as i took it at night not the morn. So i stayed off it. Its about 2 weeks now and the migrains are still coming. I ran lut of imatrex about 3 days ago. Thre first day without i roughed then took a percaset i had left from a jaw infectionbout a month ago. Had bout ten of em left. They dont stop the migraines just kinda make you not care so much. Next day at work was hell .. im an iron worker. Last night was worse. Always is at night. Got up took 2 percs slept for an hour rolled around for another 2 and took some benadryl and another perc., they gave it to me on a couple ocations that i had to hit th ER for a bad migraine it seemed to help when with the imatrex and tramadol so i figured it couldnt hurt. Got another hour and woke up again in agonie but i had to go to work anyways so i got dressed and headed out. When i got to work i was zonked and popped an adirol that i found in my tool box to wake up. It took affect and bang. No more migraine. Till lunch so i took another .... whada ya know. So here we are im typing ... lil depressed from the painkillers and strungout on addirals ..... should have taken halves after 2 weeks of none .... and exhausted. But no headaches and seriously reduced pain after i take a 24 hour sudifed ........ IM LOSING MY darn MIND!!!! Any ideas???? Anyone ???? Please .... this doesnt make any sense. How the hell can an alergie madacine make it all feel better .... whats with the migraine parade and how the hell can geographic location have anything to do with nero type pain .... ok im done. Please though .... a lil help?

I divided your post up into paragraphs - otherwise, it's very hard to read....Debbie

Post Edited By Moderator (Acheybody) : 4/29/2014 10:38:15 PM (GMT-6)

Posted 4/30/2014 1:46 AM (GMT 0)
You might have a type of environmental allergy. Have you talked to an allergist?
Posted 4/30/2014 4:44 AM (GMT 0)
CM,

Wow, you have a lot going on....I wish I had some help for you, but I'm afraid you'll just have to get to the bottom of this problem layer by layer. It sounds like you have a doctor now that you trust? That's the first step.

I've heard that Cluster headaches are some of the worst pain known to man. I used to get horrible Migraines, and still get a touch of them now and then, but not Clusters.

Good luck to you!

Debbie
Posted 4/30/2014 7:51 AM (GMT 0)
Welcome clustered! Wow, what a story! It makes me sad when I read story after story like yours. It use to be similiar to my story too. I just wish we didn't have to go through all this difficulty to get our fibro on a right treatment plan. The problem is many Dr's are not looking for fibro and they totally miss the diagnoses. So many of us go through years of testing only to get frowned upon as we decribe our symptoms. Then we began to doubt ourselves too. I am so happy you found us. Maybe we can help you and support you.

I have found out if you educate yourself about fibro it makes a world of difference. I cried when I first read my books on fibro. The things I read we're all the symptoms I had for years and years. I just would ask myself, why couldn't the Dr's see this and diagnose me right. It was like finding the missing puzzele. So if you haven't bought some books do so. Most all your symptoms you describe are fibro related. Your not losing your mind. It's called fibro fog. I have it bad some days. You can read all this in fibro books. This way you will have understanding of your symptoms your going through. It use to scare me at the dr's office when I saw a ton of diagnoses. After educating myself I found out that 95 percent were all fibro related. I wasn't killing over or going crazy, but my Dr's never put two and two together. It almost sounds like it might be happening to you too.

Your work sounds like its hard manual labor. I bet your having trouble working. Fatigue and pain are the most common issues we have. I don't know how you work from all the symtoms you describe. You will find out when your less stressed things work much better. I found out making life style changes really help my fibro. Yes, the weather can play apart in your fibro pain. I do live in Alaska, but I have learned to adjust to it.

I think your not losing your mind. As I said its fibro symptoms and you need to read and educate yourself. One thing you will learn that fibro patients are very senstive to medication. Sounds like your body is senstive too. I have had to learn the hard way myself. I try not to take too many meds because of the terrible side effects that go with them. So the more I keep my treatment for fibro simple the better I am.

I came to this forum in terrible shape. I was depressed and at my ends too. As I educated myself and received great suppport here I began to turn my life around. It didn't happen over night, but I am happy to say that I have my fibro pretty much undercontrolled. I can say I have my joy back. My meds were causing my depression plus having to deal chronic health issues. So by seeing a therapist, making some med changes and life stle changes I got much healthier.

I hope I could help you. You must be strong if your still working with all this. Please let us know how we can help you more. I hope we see you around. I know there are other men on this forum too.

Post Edited (ak angel) : 4/30/2014 1:57:32 AM (GMT-6)

Posted 4/30/2014 9:13 PM (GMT 0)
Thank you all.
CouchTater an allergist is the next step to see if it is agrivating the condirion.
Acheybody thank lyou for straightning that mess.
Ak Angel yes its a very physical job. But i dont have any options. Disability wouldnt even come close to feeding and housing 3 kids and two adults. The med problems are just as you said. If there is a side affect im going to get it. Most .....actually almost all the meds i try to take kick me hard. For the sleep issues i had to switch to "medicine" not prescribed yet in my state. Taken right before bed i can sleep.. Wish it worked on the pain. It does the job but its a big risk. If i get injured on the job ..... im in a union so i have insurance that will cover me even in between jobs.. untill all this started i had never taken much more then asprin and rarly. Until i was about 26 27 .... thought my body could fix it better. Got to say im heading in your direction .... simple treatment and deal with it more directly. Drugs are not in the cards for me i think. Maybe an exersise routine to build up my muscles so the averge day isnt such a strain?? I dont know gonna tlk to the doc soon.
Posted 5/1/2014 2:49 AM (GMT 0)
There is another thing you can help me with. My wife is having trouble dealing with my down time. She is very considerate but she has been shoreing me up in our home lives for 3 years now. Its wearing on her. Not in a breaking way more of a constent stress mode. Having to make my apointments keep up with my presciptions, and remind me to do about everthing. She deals with a lot as well and what im asking is how can i make it eisier on her? Any secrets or tricks maybe an idea or 2
Posted 5/1/2014 7:57 AM (GMT 0)
Clustered- does your wife work outside the home? It does come hard on the spouse when we are dealing with chronic health issues. If she doesnt work outside the home, then I hope she can get an understanding of fibro and how it works. If you read fibro 101 it has an article called spoon therapy. It really helps others see what we're going through. If she can read things and educate herself it will go along way in your marriage. Then maybe she woudn't mind helping you make those appointments

I forget things on a daily basis. I use a pocket book calendar and write down everything there. I buy sticky notes and use them all the time. Once my husband realized how fibro works, he has a better compassion to help me. It's like night and day difference. I know it's still hard on him because I dont have the energy to do things with him.

If you know you want to spend time with your wife then try to reserve your energy for that day. It's all about balancing. You can find articles on line too to help you achieve your issues with fibro. Exercise is very important with fibro. You have to becareful, especially not to over do it. The best tool I learned here is do things in moderation. It can be hard sometimes to do this. So becareful with lifting weights at first. You want to start slow and see how you respond.

I hope I could help some.
Posted 5/1/2014 8:54 PM (GMT 0)
Yes you did and thank you. She does work. In the evnings. I in the day. We swap vehicals at her work and i take a turn watching the kids. Its rough but she will be quitting in a month.
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