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Migraine's Anyone?


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Dear POTSy patients: Not only am I new to this forum, but I have never been in any other chat room or forum. Please forgive me if I go on forever, but it's so nice to see other "me's" out there! Over the past few days I have been reading all of your comments. I have laughed and cried at your similar experiences and am a little frightened of all that I do not know.

Now from the beginning - In trying to make a long story short, I have been misdiagnosed since the age of two with epilepsy, diabetes, hypoglycemia, border-line diabetes, and my personal favorite - hyperchondria! I was subjected to numerous tests and diets. I was given a glucose tolerance test and had a grand mal seizure. The most perplexing for doctors was (and still is) glycosuria (sugar in my urine. Does anyone else have this?) None of the diabetes tests added up, so I was sort of in medical limbo until my adulthood.

My entire life I dismissed the long list of POTSy symptoms. I thought everyone saw spots, had trouble standing in church, and passed out from seemingly nothing. My teachers were fed up with excuses to get drinks of water and my excessive need to sleep. I had constant headaches and pretty much the entire list at one time or another of everything associated with POTS. Other than that I was a normal active person.

After the birth of my first child I began to gain weight, slow down, and have more defined symptoms. I also started having intense migraines. I usually go blind in one eye, throw up for 3 hours, and then have an intense headache for the rest of the night. Total recovery usually takes 2 days. These problems were all dismissed by doctors as being a stressed Mom and getting my body back in wack.

By the time my third child was born I felt like my body was falling apart. I was up to 2 migraines a month and just always feeling sick and tired. This really put stress on my marriage, and even now if my husband hears one more thing about POTS or my symptoms he will go nuts! "What do you expect when you have 3 kids" right?

I finally went to the Cleveland Headache Clinic for testing. I failed the tilt table test and a few others. I was finally diagnosed as having POTS and cried as I read the symptoms and came to the realization that I was not nuts. I was told that migraines were not normally the main issue with POTS patients, but I was put on Topomax for awhile and a beta blocker. The doctors were very pleased that my migraines went away - down to only about one per year for 3 years since I first started. I also noticed I was not as emotional and had just a little more energy. I still remain on the beta blocker twice a day.

Well, I'm pregnant with #4 (and yes I know what causes that) and I'm up to 3 migraines per month. I am also freezing and not sweating and no one can explain that. The Cleveland Clinic says I should be on magnesium and also prescribed demeral for headache pain. I'm not sure about either one of those. - Any thoughts? The Cleveland Clinic is about 1.5 hours away and just too much effort to make appointments and actually get there and speak to a doctor who knows (remembers) my complete history. I have an appointment in a couple weeks to see a new neurologist. Wish me luck. I just want to be closer and more involved with my doctor. I am also trying to get my OB/GYN more involved in this since I seemed to have weird birthing and recovery issues with my other pregnancies. I have just been so frustrated with doctors and telling my story over and over.

So that's about it. Let me know if you have any advice. I look forward to reading your comments. Sorry to get this off my chest but it's nice to know that someone out there is going through the same thing.

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Hello! Welcome to the forum. Sadly, your story of misdiagnosis after misdiagnosis is not a rare one. We, at DINET, really want to focus on physician education and hopefully spread awareness so that others do not have to go through what you have been through.

I'm sorry to hear the migraines are back. Magnesium does help me with my POTS symptoms in general, and also sometimes with headaches.

You gave me a good laugh with the "Well, I'm pregnant with #4 (and yes I know what causes that)" comment. :rolleyes:

What kind of "weird birthing and recovery issues" do you have?

Glad you have found us, but sorry that you had to in the first place.

Michelle

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Oh, one more thing... Do you have low blood pressure? If you do, demerol can make it even worse...so be careful. I'm guessing you probably don't have low bp or your doctor wouldn't have prescribed demerol in the first place (I hope).

Michelle

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Hello!

I was diagnosed with POTS approx. 4 years ago at not long after having my first and only child, I started developing severe migraines. No one believed me that I was having them so frequently and so painfully. The last resort was to admit me into our Hospital to see if they could "break the cycle". This did not work either. I am now on a medication called Depakote which I take 1000mg once per day. The headaches have slowed down and are not as severe except for around my monthly visitor.

Is Demerol safe during pregnancy? It amazes me how you can not take aspirin or motrin but they can pump you all full of narcotics. I know...I was on Percocet for the majority of my pregnany due to severe cramping which kept causing me to go into pre-term labor.

I wish you the best of luck! Please take care of yourself.

Susan

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Hello and welcome to our forum! Have you checked out the our physician's listing?

http://www.dinet.org/physicians.htm

and there are several other lists...

NDRF:

http://www.ndrf.org/physicia.htm

and from the Chronic Fatigue folks:

http://www.co-cure.org/Good-Doc.htm

Nina :rolleyes:

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My heart bleeds for you and I understand exactly what you are talking about. I don’t even want to think about my list of diseases anymore. I am standing on 5 diseases at the moment excluding all the other doctors’ opinions of what works and what does not work. I use to get 3 to 4 migraines a week. I would get a solid one for days on end. I understand exactly what you are talking about. I don’t get migraines anymore and only bad headaches. Dry to determine if something is not trigger the migraines. For me it is sugar, and there is sugar in everything. I am so sensitive to sugar that I can't even eat tomato sauce (sugar in).

The body temperature problems are typical to Pots. Our body battles to regulate its temperature. I am having fun lately with the heat. It makes me terribly nauseous and I want to pass out if I am in the sun ;) for a short while. Just get use to it I guess.

Magnesium tablets work fantastic for our sleeping problems and heart cramps. I get very bad heart cramps and with the magnesium it helps a little. But I enjoy my sleep being a "little more normal"

I am so glad you are on the site now. So many of us have not had children yet and will need all your advice. You obviously have a master degree in pregnancy by now. I have been advised to start as soon as possible by my Gyny but my doctor has advised me to think about it very serious and others have advice me to rather not have at all. Well we will see what God has planned for me in the future.

:rolleyes:

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Welcome to this forum. I'm glad you found us. I'm sorry that you've had such a go of bad luck with the medical community. I would like nothing more than to educate the medical professionals that we have to deal with and develop techniques for public awareness.

It would be nice if your husband could read some of the comments here. Sorry can't remember the name, but we had someone's husband comment last week and he was terrific. In fact there are several husbands that read these posts, comment and support their spouses/partners.

I noticed that you made a comment about your fourth pregnancy, I hope your not getting outside pressure about the number of children you have. I'm a single mom of six and love everyone of my children. I've heard just about every nasty comment there is about bringing multiple children into this world. But I've never been on welfare and my children have never been hungry. Their well loved and happy for the most part (I have teens and I wonder if their every happy. Just kidding, they have their moments but they are fun!)

Back to headaches-

I was getting daily headaches and migraines long before POTS. My vision and hearing would be distorted. A year ago I started vomiting with the migraines.

When I was taking Atenolol it would keep my headaches and migraines at bay. Sometimes I would take fiorcet for my headaches, especially if it was from caffeine withdrawl. Usually Imitrex cures my migraines. There has only been like 2 or 3 times that it hasn't worked. I can usually take 25 - 75 mg of Imitrex and be rid of it all together. If I start early enough when I feel it coming on, I can get rid of it without complications.

I can't drink wine anymore because it brings on the worst migraines you can imagine.

Anyway, that's my 2 cents. Good luck with everything and I hope your new doc works out for you and provides you with better management.

I would also suggest going back and reading previous posts, there is a lot of great information there.

steph

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Wow, so much support in just one posting. Thank you everyone!

Michelle & Ling: Yes I have low blood pressure. Most of my doctors think this is great. I have an OB appt. today. I am going to try to get them to take a sitting AND standing blood pressue to see if there is a difference. I was not too keen on the demeral idea anyway. Besides how am I suppose to take it for migraines if I spend most of my time throwing up?

I was so surprised to see so many of you who have had problems getting pregnant. I realize how lucky I am and how that should have been an issue for me as well. When I was younger I was an athlete in several sports and rarely got my period. Before I was married I completely stopped. (I thought it was just stress.) (I'm now reading that this could be POTS related.) I had some testing done at MCO. I was told I would have difficulty getting pregnant and that I should start on the pill to force my body into a cycle. I was told this would take about 5 years to kick in. I was to alternate three months on and three months off. Well, wamm! I got pregnant on my first 3 months off cycle. I did get headaches from the pill, but my little girl was worth it.

The rest of my children were born 2 years apart so my body just sort of got on it's own cycle. This past summer I'm sure my body thought it was supposed to be pregnant. It went out of wack and I have not had a period since June 2003. In January 2004 I went back on the pill. I called my OB to let them know the pill was just making me too sick and I was throwing up in the morning...surprise I was pregnant!

Yes, we are bracing ourselves for the comments regarding my 4th pregnancy. In fact I have told no one but this forum. I am 14 weeks and we plan to tell our family, friends, and work on Easter. The reaction to my 3rd pregnancy did not go over so well. My husband and I both work (we are sort of on different shifts to stay home with the kids) and I think our family felt like we were in over our heads. My Mother, who is a nurse, worries about my health issues and stress level. I can already here the "breeding" comments now along with "don't you know what causes this by now!" I was an only child, so I have always immagined a large family and we're doing OK. When you get married everyone keeps asking when you are going to have a baby. After the first one everyone expects a second. After that you're pretty much crazy right? Anyway, I love my kids and the best of luck to everyone trying to have their own.

Sorry this is sooo long. As for the weird birth and postpardum experience. I really had a hard time with needles. Each pregnancy I was poked at least 11 times. They had trouble finding the veins or the blood would just quit flowing. They also had difficulty with the epiderals. They strangly never seemed to take. The last child they attempted 3 times and finally got it. I know there were some blood pressure issues with the epideral, I was usually pretty out of it. I don't react well to drugs & alcohol, so when I was given nubane with my first pregnancy I really went for a loop and swore never to do that again! During the transition fase I would get very sick and shake. This appears normal to the nurses, but it feels more like a seizure to me. Now that they have discovered the POTS I'm sure that they will monitor this more carefully.

After the delivery I felt great. A few hours later I would get chest pains and shortness of breath. They usually just said I pushed hard. I'm going to have them watch that one a little more closly as well. By coincidence I had large volumes of fluid during each delivery. After reading about POTS and pregnancy I have come to understand that this is essential to a good delivery, so I was lucky. I have not had a C-Section, but I'm a little worried about low blood volume and pooling if I ever need one. I think that's it with the pregnancy stuff.

Nina: I have had trouble finding a neurologist in my area let alone someone who specializes in POTS. Thanks for the web sites. I will try out my new Dr. Patel and see how it goes. I just want someone who listens carefully, actually investigates this disease, and remembers my face upon my next visit.

Ling: I used to have heat issues in the summer. I am finally in a house with air conditioning and am doing much better. I used to be so hot my body would swell and itch. This winter I can't seem to get warm. We went to Florida for Spring break and I wore a winter coat and jeans the whole time I was there. My hands are always freezing. I have been trying to walk about 1.5 miles each day and I can't seem to break a sweat. I'm not sure if there is a cure for this. I wish I could take something for this. Along with the halter monitor, I do a yearly stress test. They can never get my heart rate high enough. I'm usually in a hard run on a high incline by the time I finally quit. Is this because of my low blood pressure? or could it be because of my beta blocker? My theory is since I can't break a sweat and get my heart rate up....I can't lose weight. I have gained 20 pounds with each pregnancy. I eat OK and am fairly active. Any ideas?

Briarrose: I think I have just lived with my symptoms so long that my husband doesn't really think I am sick. He thinks if I lose weight and work out I will feel better. One doctor that deals with Syncope actually wrote him a letter saying I need more sleep and that if my fatigue continues I could stroke out. He doesn't really take notice until I throw up or pass out. This is just such a frustrating non-distinct disease that we're just going to have to deal with day by day. This forum is awsome though. It really helps.

Oh boy, Immitrex. I had a very bad reaction to a shot of that during a migraine. This is the one time I ended up in the ER. I was very frustrated with the doctors because they acted like it was just a headache. They gave me reglan in my IV to help ease my stomache. All I wanted was to be knocked in the head with a frying pan! I finally ended up on some cancer pain treatment and slept for 5 hours. I wish I knew the name of that stuff.

Alcohol makes me sick...but my greatest weekness is pop. Before my pregnancy I was up to about 12 cans of diet pepsi a day. Now I am down to 2-3 cans. The weaning process has been literally a headache. I hope I can get down to 0 cans soon. I know this will help my POTS and pregnancy.

Well I think that sums everything up. I thank everyone so much for their comments and support. I will be checking this forum out to learn more about this crazy disease. Thanks again.

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  • 2 weeks later...

I am just worried about one comment you made about the birth. Your next baby is on its way and you are going to try natural again. I have been advised that if I fall pregnant that I could never have natural birth. To much pressure on the heart. And I could never have a epidural either. I have also read about this and I know I would never have a epidural. It works directly with out nervous systems. Like we need more help stuffing this area up in our bodies. Please read in to this I am worried about you! I dont want you to worry, but I also dont want you to not know.

Just read up more about this, my doctor is very nervous and I am not even pregnant yet. :)

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Hi Ling, yes, I am concerned. I didn't know I had POTs the first three births. I am actually more nervous now than I was with my first one. I did read up on the epidural and pushing information. My last epidural they made 3 attempts and it finally worked. With all of the births I had back pain at the epidural site for a month or so after the pregnancy. Before my first child was born I swore I would never have an epidural but I kissed and hugged the "Edpidural Guy" every time he came in to give me one!

I was given pitosin (sp) with each birth. Experts say this does not increase the pain, but I think it makes it come on faster and harder making the epidural necessary (for me.) I think the pitosin factor is actually the key to not needing an epidural. With the last pregnancy the anesthesiologist said I could probably not get another epidural due to scar tissue and it not being able to work, so I probably won't even have a choice in that matter. There was also something discussed about the flow not working properly and I had to have it inserted at a lower lumbar level on my back with the cathitur (sp) pointing down instead of up.

As for the pushing, I did have chest pain and shortness of breath a few hours to a day after each delivery. I'm going to have them observe that a little better now. In my case I only had to push a few times with each child. I'm hoping my fourth one will just walk out on its own! I'm actually more concerned about having a C-Section with all that I have read on blood volume, clotting, and blood pressure. Since I have done it before, I am more secure with the vaginal delivery.

My doctor realizes we could have had some problems in the past not knowing that I had POTs, but he is optomistic because I have had such healthy deliveries in the past. Just like every delivery is different I think every POTs delivery will be different as well, depending on the severity of POTs in each case. Right now my goal is to keep my OB/GYN educated and make sure my nursing team is aware of the situation. In my case, my Mother is a nurse at the hospital I will be delivering. She is quick to spot my POTs signs and ready to yell at the team if they are missing something. She will be at my side.

If I was starting with my first baby I would have no clue what to expect. My POTs symptoms during pregnancy and delivery have been mild and well worth each child. Since I don't know your history I would hate to say, "Go for it!" but I certainly think giving up on having children or a natural child birth is a little extreme. How about a pole on how many POTs people had babies and their experience? It will probably turn into a Mommy's forum, but I find that many women on this site were diagnosed with POTs after the birth of a child. Thanks for your concern and I will always look into everyone's suggestions on this site. Thank you for keeping me informed.

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Welcome to the group. You are not alone. I feel as if I have just read my own life story. I also found my pots diasgosis throught migraines at the Clevand Clinic. I just got over a four month migraine....horrible!!!! Dr. Stillman is the head of neurology at CC you should try to get in to see him. He is just amazing, and truly cares. Best of luck to you.

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Hey,

I get daily migraines and frequent terrible migraines. I have been taking neurontin for a year and a half and it was a life-saver. I was limping from the weakness caused by the auras from my migraines and I was losing my left arm to the same thing. I went to the ER 13 times in one year and I was really suffering. Now, I am still suffering from migraines, but less frequently and for shorter lengths of time (although I just had a killer week-long one that required some rolling around in a hospital bed in the ER). I take a lot of meds to prevent migraines and other pain, but I still have almost constant pain and lots of aura, except I have improved a lot. I have had migraines since infancy and I think they are my worst POTS symptom (of course there are several things I say that for hehe). Also, yey for the pregnance. Go to a high-risk OBGYN- they deal with bad hearts and diabetes and other complications in pregnant women, so they will treat you well and will understand that you need special care. Demerol is like morphine and is used for pain. They use it in deliveries for women who do not want epidurals. It usually comes in a shot form. I like it because it does not cause as much nausea as the others and it wears off quickly (but will often lower or eliminate the pain first and then the dopiness gets better quicker). I think triptans are bad for people with unstable BPs so stay away, I think. Also, pregnancy seems to be your trigger, so either avoid that in the future or be prepared for pain. (not commenting on your choice, just joking around in the form of a headache journal.)

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Migraines are a downer. I think changes in "female" hormones have a big role to play in migraines. I also know that migraines are one of the conditions that form POTS.

I am on a migraine regimen. As my neurologist says, the best way to treat migraines is not to have them. I take large doses of neurontin and zoloft. That seems to keep the migraines at bay. I no longer have the marathon migraines that put me in the hospital for a week at a time. I use maxalt when I have a headache along with percocet. If the headache persists, my doc gave me a schedule of when to switch to DHE injectables and so forth.

Good luck with your pregnancy. Three children and one on the way is enough to give anyone a headache.

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Hello Everyone. I haven't checked the site for about a week because I have been in the hospital and doctor's appointments. Boy these topics sure move quickly. Well, for starters I got that nasty tummy flu that went around. I was very dehydrated and went to the hospital to get some fluids to me and the baby. I was quickly given fluids and something to make me stop throwing up. Unfortunately I was NBM so I wasn't allowed anything else - even ice chips. This is not a good thing for POTSy patients.

Without something to drink (I usually drink 1-2 cans of diet pop a day...I know I shouldn't) or my normal beta blocker medication my flu quickly turned into a migraine. I begged for tylenol but they said they couldn't give me that because it wasn't on the orders...instead I was given nubane. That stuff knocked me out for about 3 hours, but I awoke to an even worse headache. My IV monitor kept beeping splitting my head in two! I finally rolled it into the hall and hung my hand off the end of the bed. Someone finally heard it going off in the hallway. I'm sorry to all of you nurses on this web-site, but I was such a terrible patient.

I was begging for any kind of pain medication and ice! Finally a nurse brought me some contraband ice! I had my beta blockers with me and snuck one of them. In the morning my Mom snuck me a diet pepsi. 20 minutes after the pop and some furinol I had only a minor headache. I feel like I could have just gone home the night before had I had all of my other needs/medications. I feel like I know what my body can and can't have more than the doctors....which leads me to my new doctor...

I was with Dr. Stillman at the Cleveland Clinic. They were fabulous and Dr. Stillman was wonderful. My problem is/was that it was so far away. I only had check-ups once a year and I was not able to drive out there for a migraine because I was just too sick. I saw Dr. Patel (neurologist) at Community Health Partners today. He may not have as much knowledge about the POTS as Dr. Stillman but he seemed to be interested in it and as concerned as I am about this pregnancy. He also has a lot of experience with migraines which is my main complaint.

He is sending me to a cardiologist next week. This way when I have my baby my OB/GYN, Neurologist, and Cardiologist will all be at the same hospital (3 minutes from my house) and all of them in the loop. I know I will have to be my own self-advocate, but at least I'll have a team available that knows my history.

Also, this doctor is willing to just take away my misery during a migraine. As most of you have experienced many people think we are drug seekers. I have to tell you, when I have a migraine I'll beg people for anything. This doctor is not going to mess around anymore. I can just come to the ER, they will call him and give me medication that makes me stop throwing up and then knocks me out.

I am so sick of going to an ER, having them run a million completely uneccessary tests and then telling me my head only hurts because I'm throwing up due to a virus! Man is that frustrating!

Anyway I have upt my beta blocker dose and we are just going to sit tight and see if that works. I am eager to work with this doctor to make my migraines go away and lesson my POTS symptoms.

I might be venturing into another topic, but I would also like to work on this weight issue. I can accept that I don't have the healthiest diet....but I don't eat like what I weigh. I was 130 pounds and gained 20-30 lbs. with each child (You do the math.) I don't eat that much, I don't eat snack food or sugar, I don't eat after 7:00pm, and I excersise. Cheesy stuff and pizza make me sick along with anything spicey...so I eat mostly chicken. I walk 1.5-2 miles 3-5 times per week and drink tons of water. I run up and down stairs doing laundry for a family of 5 and play soccer and ride bikes with the kids. Now I realize that none of this means I'm physically fit, but I shouldn't be at this weight. I see people on TV at my weight that are depicted as eating buckets of chicken and gallons of ice-cream and laying on the couch. This hurts and is not my lifestyle at all. My husband owns a music store and is in a band. I think he's cute (looks like Keith Urban) but I am constantly mistaken for his Mom! Anyway, my point is, could the POTS or beta blockers be causing this drastic weight gain? (They have checked thyroid and while it is large, it is not underactive.)

I think this will be my last pregnancy and getting rid of my migraines and weight will be my main focus afterwards. Thanks for your replies.

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