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Post  sconesail Thu 24 May 2012, 6:47 am

Hi All,

I woke up this morning with an absolutely horrendous migraine. I'd rank it as a 9/10 pain wise. I just wanted to curl up and scream. But, then I thought my own screaming would be loud and would also wake K. (my roommate). So instead, I went ahead and took an extra dose of Klonopin and some tylenol 3 and benedryl. I am waiting for it to kick in.

I am at a loss as to what to right now. I am tired and headachey. I have two things I am planning to do today- training and some volunteer work at Bear. I think I'll be able to make it as I think most of the stuff at school is just organizing some stuff and listening to little kids read- when I love to do anyway. I am just praying that the meds kick in soon.

I am so tired of all of this. I am tired of the headache, tired of the fainting, and I hate the fact that a lot of drs have simply brushed the fainting off and said "well, everything looks normal." Would someone please explain how a hr of 115+ with normal sinus rhythm is ok?

I guess I am just frustrated, tired, and hurting right now.

I don't know what else to do except use some distrationg, wait for the meds to kick in and go from there.

I'd love any advice.

Pain free days,
sconesail

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Post  Sara79 Thu 24 May 2012, 7:26 am

((((hugs))))

I posted a thought over on the other board.

Best of Luck

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Post  Porsche Fan Thu 24 May 2012, 11:14 am

scone,

start making phone calls and appointments. you won't make any progress until you make the next step.

you have to take control of the situation. what you've been doing and what the doctors have been doing isn't working.

normal rate is 60-100, and a pulse above 100 needs an explanation. syncope needs an explanation.

don't put up with the dr's crap--take the initiative.

best of luck,
pf
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Post  sconesail Fri 25 May 2012, 8:47 am

Marc,

Thanks so much for the advice. My biggest problem with the whole fainting this is that I do not know where to go from here. Every doctor I have seen recently simply looks at their piece of the puzzle and then says, well "My part is fine." I haven't had much luck with cardiologists- all of whom say that I am tachycardic, but I have a normal rhythm and therefore they don't feel they can treat it.

I believe I may try to write the dr who dr who gave the lecture on EDS and autonomic problems. If nothing else, maybe he can tell me where to go from here?

But, as you said, I just have to keep plugging away until we find some sort of treatment.

Headache is pretty bad today.

Pain free days,
sconesail

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Post  Anna's Mom Fri 25 May 2012, 4:25 pm

Sailing, my advice would be not to write to that doctor, but to call his office.

I would ask to speak to a nurse. Explain your situation and ask if this doctor could help you. Ask if he has connections to other specialists you may need. Is this a place you can go for a consult for all your issues? You are very complicated!!! Start out by saying that.

There are really smart doctors out there who like challenging cases (Anna's Chicago neuro). I know this because he told me so! We are seeing him next week. I have some ideas to share with him, and he is the type of doctor who listens to his patients.

Take that next step. Call him or some other doc on your list of prospects.

Cheryl


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Post  tortoisegirl Fri 25 May 2012, 7:36 pm

Might it be time to push the doctor/s treating your headache and migraines to treat those more aggressively and just see what happens with the fainting (plus that your history showed the pain meds don't make it worse)? If going back on long acting narcotics got the head pain down, it seems from your posts it could actually help the fainting too. As long as you have a couple doctors on your side for that, if it was me, I wouldn't care if even my family and other doctors were against it.

Its your life and only you know what is best for you. I can really relate to your struggle on this doctor merry go round where no one is connecting the issues...have you tried seeing an internist? Just something that popped into my head. Maybe they could think bigger picture and tie stuff together. That, or just keep plugging away seeing new specialists in all the areas. I get quite different answers and treatment plans depending on who I go to. Hang in there! Best wishes.

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Post  Cluelesskitty Fri 25 May 2012, 10:14 pm

Thanks so much for the advice. My biggest problem with the whole fainting this is that I do not know where to go from here.

Forgive me if I am wrong, but I have vague recollection of PF giving you a whole slew of great! advice a number of times
before,
that differed from everybody else's on the forum - have you ever followed on what Marc suggested you should do?
Just curious :]

Risa
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Post  sconesail Sun 27 May 2012, 2:49 pm

Hi All,

Thanks so much for the advice.

Pain situation- I see a Pain Management doctor who is very good and has been quite supportive about long acting pain meds in the past. I discovered, by accident, a few months ago that tramadol worked very well. (I fell and sprained my elbow and my internist prescribed ultram.) When I asked mt pain doc about it, he said it was a good idea and that he hadn't thought about because he was certain someone had tried it in the past. I am now on long acting ultram, with 50mg immediate release and Tylenol 3 for breakthough pain. I know that none of the pain meds have taken away all of the pain, but this is working fairly well or about as well as the MSContin did.


I do have an internist. He has been quite helpful, is willing to listen and is good. He just doesn't know how to treat the fainting.

I am going to back and look through Marc's advice and basically start as square one. He does give wonderful advice and I have certainly had some luck with it. But you are right, I need to look at it again. My biggest problem right now is that, for some reason, I am really a little burnt out on dealing with drs right now. I think I have just been brushed off one too many times recently. Furthermore, very few seemed to have any good treatment options. I guess I am just frustrated and tired of being told this is ok, when I know it isn't. But, as always, I am glad that I have y'all to help. I will go back through Marc's advice, check on some other things and go back to the drawing board. It took me several years and countless drs to find the right neuro, and it may take that for fainting.

The other thing that is really bothering me now is the fact that my neuro is retiring. He is good and about the only one in town who will see me, but it is still frustrating. In the last two appointments, I ended up seeing he Nurse Practioner instead of the neuro. The NP was not helpful at all. One minute, she was telling me to wear a helmet because I fainted so much and the next she said that i fainted because I "wasn't doing enough with my life." (The statement about activities came after I fainted during the appointment and she said "Well, you aren't out long.") I was supposed to have an appoitment with them at the end of the month and specifically told them that I needed to see the neuro, not the NP. As the doctor was going to be out of town that week, his secretary called and said we needed to reschedule, I said that was fine, as long as I saw the neuro in the next few months, then she said, "actually, the NP says you are fine and don't need to be seen for a year." I said no, I do need to be seen by the neuro sometime in the near future. so it looks like I will see my reg neuro in June.

But, I am definitely putting out some feelers about neuros who treat headaches and who could deal with my case. My roommate's cousin is a neuro at a university hospital not far from here- he studied under my wonderful neuro who left to run the stroke team- so I going to check with him to see if anybody there can help. I am also going to get the names of the EP/cardiologists to see if they can help.

I may also check with the NIH- I am not sure if they have anyone or are doing any research into this, but it cannot hurt to find out.

The headache is still horrible today. It is about a 9.5- bordering on ER pain. (however, I think I'll try to wait it out and see if I can get either an infusion of depakan or do a short course of steroids next week. ) It has calmed down some with ultram, t3, klonopin, and 1mg of Zanaflex.

Anyway, thanks for all your support and advice.

Pain free days,
sconesail

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Post  Migrainegirl Sun 27 May 2012, 11:03 pm

But, I am definitely putting out some feelers about neuros who treat headaches and who could deal with my case. My roommate's cousin is a neuro at a university hospital not far from here- he studied under my wonderful neuro who left to run the stroke team- so I going to check with him to see if anybody there can help. I am also going to get the names of the EP/cardiologists to see if they can help.

This sounds like a very good approach as well as going back through Marc's advice. Maybe there is another approach there to try. We are all rooting for you!
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Post  Porsche Fan Wed 30 May 2012, 12:33 am

scone,

do the best you can. phone works best--mail is often shoved off to the side. best method is to schedule an appointment, hand carry documents and reports, and write an agenda / executive summary of what's gone on, what's been tested, how you're feeling, and what you expect out of the appointment.

each day wasted is another day lost. you know who i think might help. at worst, you lose some money and time. I think it's worth a game.

if it's local or near local, same thing....hopefully you won't have to travel as far. don't fall into the pattern of just (yeah, it sucks, so i'm just going to ignore it).

that doesn't work. you have to keep attacking--that's what tough sicknesses and disease is all about. it doesn't give you a rest, so why should you give it a rest. don't be scared of the process. some things may be uncomfortable--but what exactly in life is comfortable?????????

heck, going on a doctor's visit is easier than a blind date.

-pf.
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Post  sconesail Wed 30 May 2012, 11:10 am

Hi All,

Thanks again for all the advice and support. I really needed to hear it.

I spoke with my roommate's cousin on Sunday and he had some good news and a few suggestions. He is a neurologist at the university hospital about 90 miles away. I had a wonderful neuro there, but he left to run the stroke team. HE IS COMING BACK! He will head up the headache program. He also knows my case pretty well and is willing to work with me and thinks out of the box when needed. I called the hospital this morning and he is coming back, but they are not scheduling appointments yet, but will be soon. This is wonderful news because I feel that this dr understands the situation and is willing to help.

I also spoke to one of the nurses in cardiology and there are two drs there who deal with autonomic problems. My internist has to refer me before I can make an appointment, but that will not be a problem. I was also glad that the nurse did not brush anything off. I don't have anything to lose by seeking another opinion, they also might be willing to try some different or more aggressive treatment. I think this is good.

Marc, you are certainly right that I need to be more aggressive. I am going to look over your suggestions again and I also hope the new dr is able to help or will send me to someone who can. By the way, you are right about the blind date thing.

The headache is still pretty bad- hovering at about a 9 now, but the meds are helping some.

Thanks again.

Pain free days,
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Post  Cluelesskitty Thu 31 May 2012, 6:13 pm

That is great Scone, taking things in your hands aggressively Smile

However, I am curious if you ever plan to follow any of Mark's suggestions he gave you before?

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Post  sconesail Mon 04 Jun 2012, 2:15 pm

Hi All,

Thanks so much for your help and support.

I was able to get an appointment with one of the EPs who also deals with autonomic problems at the University hospital about an hour away. It is on June 28. I have found that most of the drs there are a little more aggressive than the local drs. If nothing else, I would at least have someone relatively local who might be able to coordinate with any drs I see elsewhere. It cannot hurt.

I am also thrilled that my old neuro is returning, as he was both aggressive and willing to think outside of the box.

Marc has given very good advice and I have listened to him, and yes, I do plan to follow up on it. Right now, I am looking through my records and his advice and seeing what I have done and what might help.

The head is still pretty bad today. I have also fainted about 20 times.

Pain free days,
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Post  Porsche Fan Tue 05 Jun 2012, 9:52 pm

scone,

good luck with the new doc! i hope you have some good luck.

best wishes,
PF
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Post  milo Wed 06 Jun 2012, 3:57 pm

I know it's so freakin hard to keep from giving up. Such a long and hard battle and one that affects your self-worth. It's hard to keep getting up after being knocked down. I HATE seeing doctors!!! BUt it's part of my life...so I suck it up. Hang in there and keep plugging away and fighting for proper care.
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Post  steph Thu 07 Jun 2012, 9:37 am

I know how you feel, about throwing in the towel! I have been there many times before. Resolved to just accept my fate basically. BUT, I learned that you are your own best advocate. You have to go with your gut. Something is telling you to be worried about the fainting and HR, although the DR's are saying it is normal, then there is a big problem. You are gonna worry yourself into even bigger headaches until you resolve this.

I became very frank with DR's and I when I finally got to my current Neuro, I just took all of my 3 volumes of medical info and said that I wasn't interested in trying things I already tried that didn't work. Also, if your pain medication is not enough,or not good enough, you need to address that as well.

It gets frustrating trying to get someone to help you, and yes many times you need referrals, BUT you may try to call your insurance company. A few years ago I got on really good terms with my Ins Co case worker and because of my situation and how much money I cost them, I didn't have to get referrals for everything. It saved money in the long run and time as well.

I have personally found that sometimes teaching hospitals can be of use. You may be able to find someone that is willing to go to lengths to help you. I had an anesthesiologist who tried helping me, went to great lengths to try to stop my pain, and was willing to think outside the box. He was the head of anesthesia at Case Western Reserve and put a lot into me just because I would allow his students in the room. It didn't bother me any. I felt so crappy that I probably didn't even know they were there!

Please keep trying. I cannot imagine how you will feel if you do not keep trying to figure this out. You really have to advocate yourself. Are you able to take anyone with you to your appointments? I have found that even just having an extra set of ears can be of big help. I don't do that so much now, but if I go to a new DR I usually do. Good Luck. I am sorry you are feeling so awful and not finding any help, keep at it.
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Post  Porsche Fan Sun 10 Jun 2012, 2:06 am

Scone, I am really sorry to see you suffering.

The best advice I can give is to put extreme, yes extreme pressure on your family care and neurologist to 1 manage the pain.

And next to keep hitting the cardiology practices for a full evaluation including syncope. Your docs are lax--that's as straight as I can put it.

One major question why a young person is bouncing around at 115 beats per minute. I do not think that is the root cause of your syncope. If your were down in the 50's (beats per minute) that would much better explain. However stroke and volume is important. For syncope, there are many facets including the heart, its electrical function, as well as flow.

i still have to be careful with the position of my head--i have at lest 2 herniated discs in my neck, an the higher the elevation of my neck the problem re-occurs. I now why and the the pacemaker compensates.

this is not an easy problem. all the more reason to keep hunting for the best. Even though a pacemaker has solved at least 90% of my problems, I still have serious issues to blood flow to the brain and spino-positional response. I'm seeing an ortho surgeon on monday about my neck. I'm not fixed by the pacemaker--it's just a large band-aid to the problem. Keep hammering the doctors! No more pleasantries. This is trench warfare. If you don't believe this is where you're at--spend some time relaxing and think....it is purely trench warfare.
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Post  30yrsofheadache Sun 10 Jun 2012, 5:30 am

I agree with PF, Scone. It is war, and you need to prepare. First off you need better pain management so that you can have time to think. It is unacceptable for your pain level to be so high (so often) with the stimulator and the meds you are taking. I would tackle that issue first, then move on to finding a Dr. who is really willing to investigate what is going on with the fainting and pain.

Otherwise your only alternative is to depend on someone else to do the investigating for you. Since it seems unlikely from what you share here, it is up to you. I have spent many years of my life doing the same, so I understand. I have wheedled 3 diagnoses from Dr.s, now I'm working on another. I am not a Hypochondriac or attention seeker. Just a person who has lived with pain most of my life and I want to know why (and live a lot longer).

Off my soapbox now, I hope you know this is sent with love! I wish you could come back to VA and see Dr. S. He and a colleague have helped Zoe so much.
Hugs,
Cindy

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Post  milo Fri 15 Jun 2012, 6:17 pm

How are you doing SS?
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Post  sconesail Thu 21 Jun 2012, 3:51 pm

Hi All,

Thanks for all the responses.

I am really going through a rough patch with the fainting and migraines now. I had an IV and it helped some, but not enough. It is just frustrating. I have an appointment with my pain dr on Monday. I am also seeing a cardiologist at the university hospital about 90 miles away. He is an EP. My wonderful, old neuro is coming back to head the headache program there- he is very good and extremely sympathetic, so I will chek in with him as well.

I am also looking into some other things. There seems to be some link between Ehlers-Danlos and Autonomic problems. I Have some of the symptoms. So we are wondering if this could be a mild case of EDS causing the problem. So I am checking that out as well. It is clear that is probably an autonomic problem.

Pain free days,
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Post  Porsche Fan Sat 23 Jun 2012, 11:24 pm

Scone,

I'm glad you're going to get in to see a doc. Just a bit of a caution though--we see and read things all over the place. You can find symptoms of just about every disease in a lot of thing, i.e., headache.

What you need to do, rather than try and focus and say to the doc "I have Ehlers-Danos." is to say:

-I have migraines
-I faint, and faint often.

Then whatever else. Scooting around to different hypothesis just doesn't work. You still haven't even had a proper cardiac review let alone go chase a rare disease. Mild cases do not cause severe problems like syncope multiple times a day.

Autonomic dysfunction, yes I think that's a possibilty that's contributory. Orthostatic hypo, yes that can be contributory (note, I've been diagnosed with both). Symptoms and disease definition does not always correlate. That's where the "art" comes in.

Just my suggestion. I've run into this issue myself and have learned....don't unload 20 symptoms and 20 diseases on the doc. They have an easy way out and say it's complications from those other problems.

Stick to the symptoms. Then tests need to be run to rule in or out problems.

Best of luck.
PF
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Post  sconesail Tue 26 Jun 2012, 8:07 pm

Hi All,


Thanks again for all the advice and support. I really do not know what I would do without y'all.

You are right. This is war. It is clear that Cleveland was a complete failure and did not provide any answers or any treatment. This left me and my family grasping at straws. Both of my parents are physicians and I think the "I am an MD and I should be able to fix my own child." They did the same thing when I was first diagnosed with migraine. I know that they can't fix it, and they know it too, but it won't stop them from trying.

Marc- I can't thank you enough for all of your advice. I will definitely take it regarding the visit to the dr. I will tell him that I faint, have records with me, and say- what should we do. My father will be there too.

I still have a really bad headache. I also fainted and messed up my ankle today. I see my PCP tomorrow.

Pain free days,
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