Help, I am not sure where to go from here….

[CHigh2001]

Hello, My name is Crystal. I am 28 and I was diagnosed (finally) with EDS 3/classical 4 years ago. I was diagnosed by an orthopedic surgeon. So as you can imagine he pretty much only told me about the joint/muscle portion of EDS. He did say that some of my other health problems were linked to EDS… Well exactly what he said was that “EDS can make you more prone to having those problems”. Which to me meant that the EDS didn’t actually CAUSE them, just the defect in my DNA made it more likely. However, the more I read and learn about EDS the more I realize that EDS may be actually CAUSING these problems and that they should all be treated together… not separately. Please read and give your opinions. (All of this got worse/happened when I was around 11/12.. I started my period at 11 and got Mono that year that lasted 3 months! I had to be home-schooled the next year so I would not be held back.)

I have Paroxysmal supraventricular tachycardia (PSVT), which is basically a rapid heart rate that comes and goes. When I am having it it is much worse upon standing and can make me pass out if I am not careful. However, valsva maneuvers work most of the time…. at least until I stand or bend over again. Occasionally I have spells were nothing I do will make it slow down. Those times I take a Xanax and that typically slows it down a good bit. Due to already having super low blood pressure I can not take beta-blockers to help keep it low all the time. Besides, I may go 6 months with it not doing it and then have it every day for a year!! ugh. I have had the tilt table test, echocardiogram, stress test, and worn a healthier monitor for over a week. This is the only diagnosis I was given other than the valves in my heart are a little larger than normal but it looks like I was born that way so it is ‘normal’ for me.

I have had headaches all my life and I have had diagnosed migraines since age 11. It was discovered at age 14 that I have a fluid filled cyst in my brain at the brain end of my brain stem. There is no way to remove it without MAJOR brain surgery and the doctors decided that it was not causing any pressure or symptoms, except when I have migraines. But once again due to the extra low blood pressure I can not take most migraine meds and the others are typically sulfa based which I am allergic to. So narcotic pain meds are the only option and only mask the pain until it decides to go away. Most of my migraines start at the base of my neck or directly behind my eyes with pressure and tightness. I am wondering if I have slightly higher ICP and that is what is making me more prone to these. I have 10-20 migraines a month. No one will do anything. They just throw their hands up and say they can’t help. Also migraines are worse when my heart rate it up.

My blood pressure is typically around 90/60, but will drop to 84/52 fairly regularly and can go as high as 120/84 without any reason that we can find. The lowest it has gotten (without meds) is 78/47…. which was weird and scary since I was still awake. No one seems worried about this, except me! This can cause me to pass out if it changes suddenly or spike a migraine if the shift is up.

I am allergic to SO many things. I have severe allergies and used to take allergy shots when I was little until they discovered I was reacting worse to the shots than to everything else!! I also can not take the flu shot and any vaccines make me extraordinarily ill for weeks after taking them. They always made me ill but it was much worse after age 11. I can not take zertec because I will literally not sleep for 2-3 days after one dose. Bendryl is the only thing that help but it makes me sleepy and foggy. So I take it at night and when I absolutely have to. Once again no one wants to help with this because the few meds they threw at it I could not take.

I have had stomach issues since birth. The only milk I could take as a baby was ice cold 2% milk with corn syrup mixed in, and I still threw up half of that! Oddly this did not make the docs think that I might be lactose intolerant. It wasn’t until high school that someone mentioned that! Anyway, even without the milk I get nausea for no reason. Sometimes I can eat something fine and the next time it makes me sick as a dog. I can not digest protein correctly (not a diagnosises just what I have noticed myself through elimination diets). Eggs are a HUGE no no unless it is just one baked into something. Eating carbs with protein seems to help me take it in better. I am also anemic but can not take iron supplements because I throw them right back up within minutes. But no one will give me shots to fix this because I am not at crisis levels… just almost. I have diarrhea sometimes and constipation others… with no real relation as to why. Oh, and I am hypoglycemic… but thats just mentioned in passing by docs. I keep glucose tabs with me all the time!

I have burning, tingling, numb, and vibrating sensations in different part of my body at different times. Sometimes I can figure out why, but sometimes it is just random with no explanation. I am running out of letters on the counter so here are the diagnosises I have received: Endometriosis, PCOS, EDS 3/classical, blebs on lungs (corrected surgically), PSVT, subarachnoid cyst in brain, arthritis, allergies, lactose intolerance, anemia, infertility, high testosterone, stomach ulcer, chronic migraines, tension headaches, low blood pressure, hypoglycemia…. thats all I can think of right now. Of course I have been told by MANY doctors that it is all in my head! Ummmm…. no not when there are physical symptoms right in front of you!!!! Anyway… any thoughts will be greatly appreciated. I am lost and do not know where to go from here. I do not have insurance at the moment so choosing where to go next is very important. I have also started having some problems with memory which is worrying me ALOT.

Thanks, Crystal

[mother1991]

Crystal, with all your diagnosises, have you applaied for Social Security Disability? If not then do so this canhelp especially with medical care. I also want to let you know you are not crazy. Doctors do not always know how to treat correctly EDS and we have to educate them ourselves. We have to in some ways become experts in our own conditions and be educators. I would suggest you keep copies of all your medical records, so when seeing a new doctor you have everything right there. I am not sure in the state you live but there is always medicaid that can help with medical care and medications. Also in most areas there are community health centers that may be able to help as they alot of times have clinics for those with no insurance underinsured and also low income. they have many programs as most funding is federal. If not also check with Social Services where you live as they can also help with any resources of medical care where you live. Most teaching hospitals also have different programs as well. Need to investigate the resources in area and state and most importantly ask questions, if one does not know the answer then ask whom may know get names and numbers and keep going. Best of luck.

Christina

[Dr. Diana]

Hi Christina, I’m so sorry to hear the menu of issues you have. It’s lousy, but think of it as the only way to go is up, Honey. If it helps to know, many of us here (including myself) have most, if not all of your conditions. Even with “Dr.” in front of my name, I can’t tell you how many docs suggested I see a psychiatrist! You’re certainly not alone there. In the Baltimore area, there are a lot of doctors who deal with connective tissue disease, and they “get it”. I agree with mother1991 that applying for disability is a good idea. A social security disability attorney can help you, and their fee is limited so you don’t need to worry about losing your shirt to pay for that help! Then you can see some of the experts to get some direction. I really like Dr. Clair Francomano in Baltimore, and she oversees my care (and that of my kids). She also understands the issue with the pressure in our heads. Diamox will help with that, but it also lowers blood pressure a bit, so you’ll want to work closely with a doctor. It sounds like you fit the “mast cell disease” profile, too. That’s good because you have something to work with. Many people start to respond with zantac (and benadryl, in your case). Again, Dr. Francomano is on board with this, too. Our family just added Gastrocrom (by prescription) and are noticing that it is helping us a great deal. Dr. Castells is the expert in this. Meanwhile, you may want to check out tmsforacure.org . The people there are wonderful, and have talked me through many a complicated journey! You MUST see this Patient Experience Letter, too. It’s here (see the first download?): mastocytosis.ca/ Humbly, I ask you to download The Driscoll Theory, Part 1 to explain most of it (see it on the home page of this website?). This will help your doctors if you can’t see someone “in the know” yet. Just find someone who is willing to listen and work with you. The drugs I mentioned are not terribly expensive, they all come generic (except for Gastrocrom, but there is a cheaper pill available in Canada). Hang in, Honey, and please keep in touch with us. Many of us have walked this road before and can do our best to be your tour guide. OK? You are certainly not alone, although I’m sure it feels like it at times. Big hug…

[Dr. Diana]

Hello, My name is Crystal.

I have Paroxysmal supraventricular tachycardia (PSVT), which is basically a rapid heart rate that comes and goes. When I am having it it is much worse upon standing and can make me pass out if I am not careful. However, valsva maneuvers work most of the time…. at least until I stand or bend over again. Occasionally I have spells were nothing I do will make it slow down. Those times I take a Xanax and that typically slows it down a good bit. Due to already having super low blood pressure I can not take beta-blockers to help keep it low all the time.
I have had headaches all my life and I have had diagnosed migraines since age 11. It was discovered at age 14 that I have a fluid filled cyst in my brain at the brain end of my brain stem. There is no way to remove it without MAJOR brain surgery and the doctors decided that it was not causing any pressure or symptoms, except when I have migraines. But once again due to the extra low blood pressure I can not take most migraine meds and the others are typically sulfa based which I am allergic to. So narcotic pain meds are the only option and only mask the pain until it decides to go away. Most of my migraines start at the base of my neck or directly behind my eyes with pressure and tightness. I am wondering if I have slightly higher ICP and that is what is making me more prone to these. I have 10-20 migraines a month. No one will do anything. They just throw their hands up and say they can’t help. Also migraines are worse when my heart rate it up.

My blood pressure is typically around 90/60, but will drop to 84/52 fairly regularly and can go as high as 120/84 without any reason that we can find. The lowest it has gotten (without meds) is 78/47…. which was weird and scary since I was still awake. No one seems worried about this, except me! This can cause me to pass out if it changes suddenly or spike a migraine if the shift is up.

I am allergic to SO many things. I have severe allergies and used to take allergy shots when I was little until they discovered I was reacting worse to the shots than to everything else!! I also can not take the flu shot and any vaccines make me extraordinarily ill for weeks after taking them. They always made me ill but it was much worse after age 11. I can not take zertec because I will literally not sleep for 2-3 days after one dose. Bendryl is the only thing that help but it makes me sleepy and foggy. So I take it at night and when I absolutely have to. Once again no one wants to help with this because the few meds they threw at it I could not take.

I have had stomach issues since birth. I have diarrhea sometimes and constipation others… with no real relation as to why. Oh, and I am hypoglycemic… but thats just mentioned in passing by docs. I keep glucose tabs with me all the time!

I have burning, tingling, numb, and vibrating sensations in different part of my body at different times. Anyway… any thoughts will be greatly appreciated. I am lost and do not know where to go from here. I do not have insurance at the moment so choosing where to go next is very important. I have also started having some problems with memory which is worrying me ALOT.

Thanks Hi Crystal, I was looking over your symptoms again (I’m a bit OCD. ha). It is impossible for me to know which symptoms are from the cyst near your brain stem, when when I look at all of your symptoms together, the one thing they share is possible mast cell disorders. Mast cells degranulate and release some powerful chemicals in the body which can result in BP drops (even shock), allergy sensitivities galore, organ involvement, skin involvement, IBS, and nerve involvement. You have so many of the signs and symptoms, and we’ve found that EDSers are more prone to mast cell disorders (big time). Did you read The Driscoll Theory? Some of us have a bit too much pressure on our brains, too. I think it would be worth your time and $$ to see either Dr. Castells or Akin in Boston about the possibility. They will look at your records and symptoms, then consult with you on the phone to start. How great is that? Xanax is a benzidiazepam which helps control mast cell degranulation, but cromolyn sodium may just turn your life around, truly. Will you check into it and let us know? Big hug, 🙂

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