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still getting diagnosis, feels like runaround
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Master
Picture of JennyHOST
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Hi Valann,

My goodness! Your symptoms sound so severe--and you're experiencing so many of them! It's easy to understand why you're feeling overwhelmed.

Your doctor's appointment can't come soon enough. Bring any/all records with you. You can never have too much information for appointments like these! Be sure to write your questions down so you don't forget to ask them. Make sure you let the doctor know just how much these symptoms are interfering with your daily life.

We'll be thinking of you back here! I sure hope the doctor has some good ideas for your care...

Let us know how your appointment goes.


JennyC
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Posts: 354 | Location: PA | Registered: 04-02-2011Report This Post
Grasshopper
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Good morning all,

Good news I suppose, the Boston neuro doc said regardless of all the physical reactions my body and head keep having, there is no seizure activity in the brain. He is dismissing the fluid in the sigmoid sinus or any possibility of CSF pressure issues, and he said no Chiari. He even questioned if I have migraines because I have way to many triggers, and am in a constant aura/migraine status instead of being episodic. So he is recommending to my reg neuro to ween me off the Dilantin, and recommending a couple migraine meds to try. I asked him about a walker or physical therapy for my legs and he said he would send that recommendation too. He said rheumatology should be the right doctor to handle the majority of my issues. My rheum appt is Nov 5th. I just hope she has something helpful to say because at my first appt with her she said it all sounded neurological. So, I still have daily constant migraine. I no longer take any pain meds even at the worst pain level. I just breathe my way through the pain like you do during child birth. If I had to try to work or be in public I would have to load up the pain meds again though. For now though I am trying to get my body med free. I am even going to stop all allergy meds for awhile. I know I can't stay off the allergy meds for long, but I am going to try to push for at least a month. Have a great weekend everyone. It's a beautiful day today in MA, maybe I can spend some of it outside in the park. Cool Valann
 
Posts: 44 | Location: MA | Registered: 08-24-2012Report This Post
<Nancy Harris Bonk>
posted
Hi valaan,

Ummm. Did we talk about picking a doctor rather than a clinic? I don't recall. Everyone says "go to XYZ Clinic, they are the best." But the best at what? Migraineurs with more complicated cases need to see experts who handle one type of disease day in and day out, OURS, Migraine and headaches. Not general neurologists, or general rheumatologists and so on. Does that make sense?

Anyway, enjoy your day in MA because I think the next few aren't going to be so nice! Thank you Sandy!

Hair Raising
 
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Master
Picture of JennyHOST
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Valann,

Well, if nothing else, you've been able to rule a few things out. That's progress, right? (Frustrating, I know--but still progress.) Diagnosis is sometimes a long process of elimination (unfortunately!). It's very good that your appointment with the rheumatologist is not far off. Hang in there! You are slowly putting together the pieces of your puzzle!

Keep us updated, OK?


JennyC
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Posts: 354 | Location: PA | Registered: 04-02-2011Report This Post
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Group Hug Whether you got to the park or not, I hope you had a very relaxing Saturday.



Dragondrool
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~~8=:>>>>
 
Posts: 6478 | Location: Montana | Registered: 01-11-2007Report This Post
Grasshopper
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Nancy,
Yes discussion about specialists has been made. I am limited by what MassHealth and BMC Healthnet allow me to do as far as doctors, specialists, and clinics. The Boston neuro specialist told me he was a migraine specialist, but still insisted on throwing me back to my local neuro and the rheum doc. Some good news about being in a constant migraine state for so long, I have built up a tolerance to the pain except when extreme. As long as I keep myself distracted I can get away with not noticing up to level 6 pain (for a short while anyway).

My kids and I went out today and picked up a few candles, batteries, lighters, extra water, and a few other necessities in preparation for Sandy just in case she does decide to drop in and cause problems.
 
Posts: 44 | Location: MA | Registered: 08-24-2012Report This Post
Grasshopper
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Hi everyone,
Sorry it has been awhile, but it was always just the same everyday hell. I finally got a proper diagnosis yesterday. I am positive for Lupus, Hashimoto's thyroiditis, and Sjrogen's syndrome.

I did go med free for 30 days, then started back my allergy meds. Then started Plaquenil, and Mobic for the pain. Fioricet never helped with the migraines, so I don't take them. I have no real migraine med except the OTC migraine med. I still have the migraines daily, and physical body pain and fatigue are severe.

The Plaquenil I was prescribed about 3 weeks ago even before official diagnosis, and at least has stopped my insomnia, and some of my more severe reactions to stimuli while out and about. I still have severe light sensitivity and have asked all my docs about getting theraspecs as a prescription so insurance will cover it(no help so far).

Since starting the Plaquenil my nausea became severe for awhile (finally back under control) and severe body pain has been triggering migraines. I just got the Mobic rx and only tried it yesterday. It killed the constant body pain (huge relief), but did nothing for the already in progress migraine. I don't want to take it everyday, but maybe every three days or so to keep the overall pain under control to help prevent the migraines from starting due to the pain.

My head is much clearer without the Dilantin, Zonegran, or any of the other meds tried. I am starting physical therapy soon to help with my problems walking and severe hip/back pain. I already have a daily exercise routine, but could use some help.

The Plaquenil takes up to 4 months to show any real benefit so I guess I am just going to have a very long slow recovery. I asked my PCP to ok my return to at least part time work, and I have been putting in applications daily since. I am not fit to return to my previous job yet, otherwise I would have returned there. Trying to figure out what job I can do without any problems has been tricky. Standing for 10 minutes causes excruciating pain in my hips and back and triggers migraine. Too many voices, kids voices, and other noises trigger migraines. Sun and flourescent lights trigger migraines. Physical pain and severe fatigue can render me useless very quickly. All reasons I am pushing myself daily to increase my endurance levels. I could handle a standing job (like cash register) if I were allowed a tall stool to sit or lean on, then get up to walk about when needed. My doctor did not seem too confident that any employer would allow it. Desk job just needs to be in a quiet, dimly lit office (ha ha), not a big chance in that except maybe a morgue. I would prefer not to be around customers for the most part (like in the back stockroom) in case I just can't pull off that friendly attitude while in physical or migraine pain, but then the amount and type of physical labor may be too much for me. High stress management positions I just don't think I am cut out for. Fun isn't it?!

Anyway I hope you all have been well. Just thought an update was in order. Hope everyone had a wonderful Thanksgiving, and continues to have a wonderful holiday season.

Edited by drooliehost just to put in a few breaks for easier reading.
 
Posts: 44 | Location: MA | Registered: 08-24-2012Report This Post
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Picture of dragondroolHOST
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I want to respond to your post, but I want to do it justice, and I only have a few minutes right now. Group Hug Smooshes to tide you over. I'll try and respond tomorrow.



Dragondrool
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~~8=:>>>>
 
Posts: 6478 | Location: Montana | Registered: 01-11-2007Report This Post
<Nancy Harris Bonk>
posted
Hi valann,

So on top of the Migraine diagnosis, you now have new ones - which is not always easy to deal with.

Does the doctor have any suggestion how to deal with your Migraine pain? Taking OTC medication more than two to three days a week may lead you down the medication overuse headache, moh path. And nobody needs that in addition to other ailments. Have we talked about moh before?
 
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Grasshopper
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My neurologist dumped all my migraine problems over to my PCP to handle. Since none of the migraine control meds helped, in fact all made things worse, I am stuck with simply dealing with it. No matter how mmany times I told my neuro the Fioricet did not help (and I only took it when things got real bad), he would not try prescribing something else. My PCP at least listened and has removed it from my rx list. I think my overall pain, fatigue, and run down condition are a huge contributing factor to my migraines. That is why I hope the Plaquenil (over time), and a carefully moderated use of mobic and ibuprofen will slowly bring things to where they can be controlled. If I still end up with migraines being triggered so easily from lights and sounds after the other stuff is being controlled, then my PCP and I will consider new migraine control options. I think I am going to ask for at least a 6 day prednisolone pack to stop the migraine, and it will give me a temporary quick fix to the auto immune problems and maybe give the plaquenil some time to help more.

I am always very careful to avoid moh and usually just suffer through the pain and misery. I have been finding though that even if I avoid using pain meds for weeks on end, I just continue to suffer the whole time. I need to take some sort of pain med at least every three days just to give myself a break, otherwise I collapse from the exhaustion of dealing with constant level 5 to 7 body pain, and anywhere form level 2 to 8 migraine pain. My good days only hit level 5 migraine by bed time, bad days hit level 8. Yesterday I did not take the Mobic and went through hell all day. Level 7 body, level 8 migraine and severe nausea from 12pm on. This morning I did not wait and took the mobic first thing this morning. My body pain is low level 3 background ache and leftover migraine started the morning at level 4. It is still hovering in the level 2 to 5 range depending on what I am trying to do. Compared to yesterday I'm in heaven.
 
Posts: 44 | Location: MA | Registered: 08-24-2012Report This Post
<Nancy Harris Bonk>
posted
Good to hear that you are trying to avoiding moh, I always feel the need to mention it because not everyone is aware of it.

Well, it sounds like the neurologist didn't have any thing else to offer (not to be confused with there is nothing left to offer you and he just doesn't know about it) and is having your pcp take care of things, which may not be the best idea either.

PCP's don't have time to specialize in one area. We've talked about seeing a migraine specialist right?
 
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Apprentice
Picture of Melanie Jane
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Valann - Do you at least have something to take for the nausea that comes with your migraines? That might help relieve some of your distress. Also, have you been put on thyroid replacement yet to treat the hashimoto's? Because that could go a long way to improving many of your symptoms. In regard to the Theraspecs (while waiting on the insurance approval) you could try a pair of very cheap ($10) "HD Vision" (HD = High Definition) sunglasses that available at most drug stores and online. I get these because I often lose my sunglasses, they fit over my prescription lenses and their tint is very similar to the Theraspecs -- oh, and they make driving or being outside with a migraine possible for me.
 
Posts: 227 | Location: LA County, California | Registered: 02-25-2009Report This Post
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Picture of dragondroolHOST
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Okay. The good news is some firm diagnoses. Combos are trickier to deal with, but auto-immune diseases love to play together.

Thyroid disease and migraine are quite often co-morbid, which means that like to exist together, but aren't connected in the sense that one causes the other. In the dozen years I've been on the forums, I've heard tons of stories of thyroid issues and migraine playing together, ganging up and wreaking havoc. I've lived it, too. My migraines were pretty infrequent and mild before my thyroid went wonky (my issue being Graves' Disease as opposed to Hashimoto's). It's like the met up on the edge of the playground and then had at it. I find that my migraine status tends to shift noticeably when my thyroid levels swing off one way or the other. It's usually one of my first signs the thyroid status is out of whack. Usually an uptick in migraine frequency happens, but sometimes they also get a bit less responsive, too. It's almost like a warning alarm. I have noticed that straightening out the thyroid status will help with the migraine status, too.

I know it's fun trying to deal with pain from multiple sources and avoid rebound, too. I navigate fibromyalgia, too. I'm glad you're mindful, and you're doing what you can to avoid rebound. I think asking about a steroid pack to help break cycles might be a pretty decent idea. It might help take the edge off several issues at once. I hope that if you go that route, it does.

I guess as far as the four-month wait for your new meds to kick in, that's pretty much par for the course. Most meds take three to six months to really get established. The good part is that you now have diagnoses, so they're not just throwing random things at the problem. You're going to get more focused care and treatment.

To echo Nancy, it might be time to seek out a true specialist. Sometimes we can get away with a general neurologist or a PCP, but when there are several disorders in play at once, and they're feeding off each other, it often takes more specialized care. You want a specialist that is going to be willing to work with your other doctor's though, and that isn't always easy to find. Now that you know what's going on, though, that might make it easier, since a good specialist might have a clue about interactions between lupus, migraine, and thyroid, and will be better able to help navigate the way you respond to different treatments.

At any rate, you need some more smooshes. Group Hug Group Hug Group Hug



Dragondrool
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~~8=:>>>>
 
Posts: 6478 | Location: Montana | Registered: 01-11-2007Report This Post
Grasshopper
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Hello again,

I agree with everyone on the specialist issue, but the Boston nuero was a migraine specialist according to everyone, and my insurance won't send me to another one after he dismissed me to my local neuro (who then dismissed me to my PCP). He simply said he could not find anything wrong neurologically via EEG or MRI. At this point since every migraine medication they tried giving me only made things worse, I figure it is safest to get the auto immune under control before tackling the migraine side of things again. I can call my neurologist and come back in anytime if I need to, and may end up back there after everything else gets under control if the migraines are still a major problem at that point. If I don't get the steroid pack right away I will definitely get as soon as I get a job. I'll need it then for sure.
 
Posts: 44 | Location: MA | Registered: 08-24-2012Report This Post
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Picture of JamieHOST
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Ok, I'm going to be blunt. I mean this in the best possible way...

Yes, you saw someone who was a Migraine Specialist. Not all Migraine Specialists are created equal, or click well with all patients.

You're probably not going to "find anything neurologically" with Migraine- and if you do, it may not even be related to the Migrainous process itself, but just another neurological issue.

As you know, these things take a while... You're going to need a doctor who knows about Migraine, right? So, why not try finding one while you're doing the autoimmune stuff. Perhaps "interviewing" a potential doctor, so you have him in your back pocket when you're ready... I'd hate to see you wait- especially since some doctors have a long wait to get in to the clinic. I know I speak for everyone when I say that I want to see you find a doctor that's going to help you. That might take time... It might not.

I'm sorry if I've come off too strong here. I wish someone had said this to me when looking for a (different type of) specialist. I waited until I needed someone, and then I really had no one... when I was in bad shape.

Hugs,

quote:
Originally posted by valann:
Hello again,

I agree with everyone on the specialist issue, but the Boston nuero was a migraine specialist according to everyone, and my insurance won't send me to another one after he dismissed me to my local neuro (who then dismissed me to my PCP). He simply said he could not find anything wrong neurologically via EEG or MRI. At this point since every migraine medication they tried giving me only made things worse, I figure it is safest to get the auto immune under control before tackling the migraine side of things again. I can call my neurologist and come back in anytime if I need to, and may end up back there after everything else gets under control if the migraines are still a major problem at that point. If I don't get the steroid pack right away I will definitely get as soon as I get a job. I'll need it then for sure.


Jamie
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