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stephanieogan

What Works For Your Headaches?

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Hi! I am recently diagnosed with POTS (cleveland clinic 9/2006) after 2 years of doctors telling me more or less that I was crazy. When I was there the doctor gave me Indocin for my headaches, and it seemed to help. I have been home a couple of weeks now and the headaches have come back non stop. The neurologist from Cleveland wants to change the Indocin to Celebrex. However the cariologist from Cleveland said not to take Celebrex. So I have a new prescription with fear to try it, due to all of the possible side effects.

My cariologist here at home does not want me to be on anything narcotic. I feel like I am stuck with a permanent headache that is keeping me from doing anything on top of all the regular POTS symptoms that I have. Has anyone come across something that works? I would love to get an idea of something (anything) that might help...

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Sorry you are having such bad headaches as I did for years--I thought they would never get better, but they did slowly over time. The only thing that helped me when they were really bad was Neurontin. The only side effect I had was being a little drowsy all the time, but I got kinda got used to it. It wasn't like I was going anywhere anyhow. Martha

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A cool freezer pack on the back of my neck is sometimes the only thing that helps with my headaches.

I know they are just awful!

Hugs,

Gena

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I am right along with you in the massive headache dept. I am seeing a new neuro. but not until Dec.22nd, so until then I got these lovely headaches to deal with...I sympathize with you. :)

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I deal with them as well, they put me on Imitrex. It works but I can't afford it even with insurance. :)

Sometimes finding the trigger can help to avoid the headaches all together?

Good luck,

Amber

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there seem to be two issues. one the headaches themselves (which are obviously no fun) and two the fact that the doctors are telling you two conflicting things. regarding the doctor issue, the fact that these doctors are at the same institution MAY work to your advantage. and there are multiple things to consider. i for one had a urologist who wanted me to try a new drug. i questioned it b/c of some of the warnings on it and ran it by my cardio & neuro. both of the doctors (the cardio & neuro) knew me and my body MUCH better than the uro (who was new to me) and they felt the medicine would be dangerous for me. thus my decision was fairly easy in terms of who i trusted most.

it sounds like both of these doctors may be new to you though so it may not be that you have a better/longer/more established relationship with one or the other. i would try find out WHY the one doesn't want you to take the new med. i think you already know why the other wants you to try it so you probably don't need to ask that. and then you could question the one prescribing it about the concern of your other doctor. it's a lot of legwork but i've found it to often be necessary to best advocate for myself & my body.

another approach - and what i was referring to about re: them both being at CC - is that you could try to get them to talk to one another. not all doctors will do this but it's most likely within the same institution so it can't hurt to ask.

the coordination of my different specialists that are all equally important but not necessarily great at coordination and/or communication is SUCH a tough thing. for me it's one of the most frustrating things about having such a multi-system illness.

i hope you find a solution that YOU feel comfortable with and that it brings you some relief,

:) melissa

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I used to get terrible headaches. I still have them daily now, but they are no longer severe. Every person is different, but for me a regular sleep schedule and pattern of meals seems to help. I know that advice is easier said than done, but it's about all I've got.

Good luck!

Shannon

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I agree with Sunfish. You need to cc both the doctors. With our disease, one doctor won't be as up to date as another. The one that diagnosed you and is more familar with POTS would be the one to go to as long as he or she knows you complete medical history and drugs you are taking at present. Bringing them both together would help. It is frustrating to have to many inputs from several doctors and can keep you from getting the help you need. I too have headaches especially after spells, which have been bad lately. I am on Lortab for bone pain from previous cancer treatment but I still have to have more when the POTS headaches come. Hope you find some relief.

Cathy

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Guest dionna

i lock myself up in a quiet dark room, take a nap, and i also use nuerotin--- it is the only drug i have tried so far that has helped me. maybe your docs can work together to help your headaches. i know that they can exaggerate your other symptoms. i always pass out when i have a severe migraine if i stand up. i wish you well.

dionna B)

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This topic has come up many many times in the past. Here is a forum search of the word "headaches"

http://dinet.ipbhost.com/index.php?act=Sea...hlite=headaches

and here is another using the search "migraine"

http://dinet.ipbhost.com/index.php?act=Sea...ghlite=migraine

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Thank you all for your input. I saw my doctor in town on Friday, and she is open to tryng some of the suggestions from all of you. I appreciate you all taking the time to let me know. . . THANKS

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my wife gets same side (L) hemiplegic migraines. we are due to see dr. stillman, headache specialist @ clev. clinic in 2nd week of nov. currently she takes 150mG effexor xr and 100mG topomax. both are said to be good headache medicines, but her symptoms seem to run together so often, we question as to their working ability at all. she will be tested while there for small fiber neuropathy. last week, we saw a local geneticist who clinically diagnosed her ehlers-danlos, hypermobility. it all has seemed to run together over the last 3.5 years. good luck w/relief.

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Headaches are terrible and I would keep searching till you find a med that helps. Some POTS meds make my headaches worse, you have to weigh up all the benefits and costs etc. I suggest you make sure your neck and back are all in alignment so it is not structural. I know that I get terrible headaches during my periods (not sure if that applies to you?). I take Feverfew, it is a herbal remedy and Vitamin B2 on a daily basis and this seems to help. I also have Cafegot med to take right at the start of the headaches. If you wait until it has kicked in, it doesn't work. Dark room, plenty of water and rest helps too.

Hope something gives you relief soon.

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hi, I had a terrible migraine a couple years ago. The onset was awful...i became disoriented, didn't know who my husband was, didn't make sense when i was talking...very scary. I had only had 1 migraine previous to this one..i do have a low grade headache almost everyday though. Once i had this onset though I couldn't get rid of this migraine for almost 6 months. I tried a few meds but they didn't do a thing plus i was also afraid of the side effects. My dad is a chiropractor and he sent me some Petadolex and I just started using that and my headache finally went away and i haven't had another migraine since. There are medical dr's who will tell patients to take this as well because there has been proven clinical studies on it. It worked for me...it might be worth a try for you. (sorry for sounding like a commercial) If you do a search for Petadolex it will bring up a lot of sites for it. If you're interested in it I could probably get my hands on an actual article about it.

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