IceLizard

The doctor gave me this strange concoction he had developed that included Reglan, Prevacid, and the narcotic Dilaudid. I really did NOT like the way that made me feel at first. I felt a wave of pain, then dizziness, and heaviness, and heat (I think that's from the Dilaudid). I felt really panicky and restless but too sedated and confused to do anything about it. Part of my mind separated from itself and went into endurance mode to get through it.

Then after some time, maybe 10-30 minutes, my mind came back. I could think and see and I could talk to people again. I was able to have a coherent conversation with my doctor, who said that the Reglan was working. My headache was gone and my sensitivity to lights was better. I was still a little dizzy and unsteady on my feet, though.

It was scary to have my brain malfunction like that. It was like I was trapped and couldn't understand what was going on or communicate. I have empathy for patients with dementia or stroke damage.

So, symptoms I've been reading about other people having happened to me today. I started the day with a really bad headache and then took an excedrine which seemed to help the headache some and went back to sleep. However, later in the day I started to develop dizziness and really bad brain fog which progressed into full-blown wandering around confusion. I was disturbed by this enough to wander around the neighbourhood to see if someone could take me to the hospital, but no one was home. So, I sat down and called 911, but when they answered, I couldn't form words! All I could say was "uh" and maybe the 1st consonant sound. I also began to develop double vision, so I couldn't see well. Can't see, can't think, can't speak... just great.

I end up in the ER where they ask lots of questions I can't answer... Finally after they figure out I am not having a stroke, they give me this IV mixture that takes away the headache and dizziness and allows me to think and speak again. The main ingredient was Reglan. The doc says that no one really knows why Reglan works for migraines, but it does, and he gives me a prescription for it.

I'm glad they figured out a way to bring me out of it. Hopefully I can stay out of the hospital for a while now...

@ angelloz: It seems that corticosteroids temporarily reduce intracranial pressure: http://www.ihrfoundation.org/intracranial/hypertension/info/C31

Maybe you could try something like Diamox which works long term?

Hi everyone. I am considering seeing Dr. Suleman, too. Like most people on here, I have already seen many physicians and tried different medications. I have the fear that I will be put through a lot of expensive tests and then be told that there is no therapy that I haven't already tried, that we know what is going on in more detail, but there is nothing we can do about it. It sounds like that has not been the experience of those who have seen him, though, thank goodness.

For those who have seen him: How did the tests he ran help determine what course of action to take? What medicines really helped in the end? How was seeing him different from the others doctors you had seen?

Thank you Raisin! I am curious to know...

Hello and sorry you are going through so much. I became pregnant 2 years ago and at first it increased all of my symptoms. I did not go off of any of my medications including category C ones, which were very low dose, and I guess by doing that I took a risk. But I did not want to risk total health collapse while pregnant and going off my meds would have done that. My son is fine now. Sometimes you have to weigh the risks and the benefits... Maybe there are other medications safer than Vicodin that could help with pain?

I had horrible "morning" sickness during the first trimester, and then anaemia. It was so bad I had to quit my part-time job. What helped with the fatigue greatly was correcting the anaemia with prescription strength iron supplements I got from my GYN. Anaemia is a common cause of fatigue during pregnancy.

Towards the third trimester I began to feel better. I no longer had morning sickness or anaemia and my blood volume had increased significantly to support the baby, which helped my POTS. I actually felt better during this time than I did before I became pregnant.

Hope it gets better for you.

Hello Becia. Glad you are getting such a complete work up, but sorry for the way the nurse is acting. I have had some really disrespectful nurses. Don't put up with any abuse but otherwise I guess try to be pleasant. Like you said, she might be having a bad day, too. I did not tolerate a doubling of my Florinef and yes, it caused me to have headaches. I am currently on .1 mg once a day and that seems to be my optimum dose. Any more or less and I feel worse.

Keep fighting and I hope you get some answers soon!

Hollin

What do I do next? What kind of doctor deals with these issues?

Thank you for your replies. We miss Malcolm, he was such a sweet cat.

I can feel the shot wearing off now, though. I am becoming itchy all over, and I am thirsty, have acid reflux and belching, and the brain fog is returning. I am having to urinate more and I have some pain when doing so. I am tired but I am having trouble sleeping. I feel "heavy".

At 1st the shot raised my heart rate and I felt overstimulated. Then in the afternoon I felt I could do things a normal person could do. I helped my stepson with his paper, did laundry, dishes, and made dinner. I could actually think and concentrate. It was as if a fog had been lifted.

I think I need to look into mast cell disorders. I have a history of flushing during attacks, although I don't with all of them. I also flush in sunlight and cannot tolerate too much sun. Hmm, I may have found the cause of my symptoms.

I'm going to take a Claritin now...

@Katybug: I am sorry, that must be so very frustrating. I do not do well off of Florinef. I hope you do a little better than I do.

Hi you all. It's a rather sad and complex story as to how I got the steriod shot. One of my outdoor cats fell off the neighbour’s roof when it was iced over and died. I had to dig his grave in the backyard, which was extremely difficult for me and involved sitting and using a hand trowel. Unfortunately I dug through poison ivy and developed a systemic reaction which required a steroid shot to suppress the allergic response.

The weird thing is after the shot I feel pretty good. I have energy again, too much in fact, and my heart rate was about 150 just standing so I had to take a beta blocker. I also had to take something to help me sleep. But, I was able to finally finish my website that has been sitting because I've been too tired to work on it. It's really great not feeling run down for the first time in a while.

Why I am having this reaction to the steroids and what does it mean? Anyone have any insights?

I had a wonderful ride around my neighbourhood in 70 degree weather. This just 2 days after an ice storm, go figure. My recumbent is a TerraTrike which is a Michigan brand of low cost (relatively speaking) recumbent trikes. I got mine via a spring online "garage" sale for the reduced cost of $700, $1000 including shipping and accessories. I figure it is basically my car so I was willing to spend that much.

I have mine fully reclined, which means I can lay back and pedal at ease. It is easier for me to pedal this than it is for me to walk. The trike is often used by people with medical special needs for rehabilitation.

http://www.terratrike.com/specialneeds.php

It's great you've been able to persevere until you found the right care. Sometimes it pays to be different...

I am excited for you! Please let us know how it goes.

I am off to ride my recumbent trike while the weather is good.

I've heard this suggestion somewhere... Take the hot shower, but then before you get out turn it to cool and rinse off your legs. This will help constrict the dilated blood vessels and reduce blood pooling in your legs. See if that helps you any.

I agree that the best approach is not to eliminate certain foods completely, because you can just become more sensitive to them. This happened to me with carbohydrates back when I thought I had reactive hypoglycemia. (With the exception of foods that you are really allergic to.)

I am sensitive to starches and processed carbohydrates. For example, Subway sandwiches are a trigger: too much bread. They cause my heart rate to increase and me to feel sluggish.

I also have had convulsions and tachycardia in response to glucose tolerance tests where they make you gulp down large amounts of glucose in seconds. So, I need to limit sugar as well.

So I want to increase my intake of vegetables, fruits, and fiber-rich whole grains and reduce but not eliminate my intake of other foods. These foods are not converted to large amounts of sugar quickly so I can avoid the side effects of a sugar rush. I'm also hoping that if my overall system is healthier some of my symptoms will improve.

I am also adding supplements based on some research articles I have read recently. Cod liver oil for inflammation of joints : http://news.bbc.co.uk/2/hi/health/1817974.stm

And Vitamin C, CoQ10, and Magnesium for other Ehlers Danlos symptoms based on this very interesting article: http://www.eds-nyc.com/wp-content/uploads/2013/06/EDSnutritionalSupplements.pdf

Vitamin B complex because I show signs of deficiency when I don't take it. I get painful little ulcers in the corners of my mouth called angular cheilitis when I go without long enough.

@Becia, it sounds like you may be having trouble with Gastroparesis. I hope you can find foods that agree with you and your body.

Thanks for everyone's input

-Hollin

That's wonderful! I'm happy that you and your doctors have a plan of attack now.

Hi you all. I watched "Forks over Knives" today which detailed how these scientists discovered how to halt the progress and even reverse heart disease, diabetes, and cancer by switching to a whole foods plant based diet. The people in the documentary felt so much better after changing their diet, It made me want to have one of those diseases instead of the one I have, lol.

My doctor's visit today was kind of disappointing, basically he told me to keep up with the exercises as much as possible. He said that dysautonomia is difficult to treat and that it is just the way I am built. But, to me my present condition is not acceptable. I need to be able to work at least part time for monetary as well as emotional reasons.

I am thinking about implementing some dietary changes to see if that will improve the way I am feeling. First I will eliminate milk. This idea comes from Dr. Peter Rowe who wrote here http://www.cortjohnson.org/blog/2013/08/22/dr-rowe-on-the-hunt-a-search-for-chronic-fatigue-syndrome/ about how milk allergies affected a significant portion of his CFS/EDS patients.

Have any of you had success with changes in diet?

I do not know whether I have hyperpots, but I have been showing some signs in that direction. Sometimes I will have both high heart rate and high blood pressure when standing. I was given clonidine for episodes of high blood pressure and it does help calm me. 3 weeks ago I tried the extended release patch but the longer I was on it, the worse my orthostatic intolerance seemed to become. I was then hospitalized with an extremely high heart rate and the doctors took me off the patch. My norepinephrine levels have not been checked.

This is all very confusing. Sometimes clonidine helps me feel better and sometimes I feel worse. I think I may need to have this investigated more thoroughly, but for that I may have to travel. Thanks for the input

Those are good questions. I have had trouble with them for years, but never quite this bad. The pattern is similar to what angelloz described: occurring in clusters every so often. They have come back since my flare up about 2 weeks ago. I was wondering what could cause them and how to hasten their departure.

Hi you all. I have been having these night sweats most nights. 4-5 times a night I will wake up dripping wet and cold. It seems to happen to me when I am dreaming. This is interfering with my sleep and making me even more tired during the day. I assume they are a symptom of my autonomic dysfunction. Is there anything I can do to prevent these?

The degree of flexibility varies between people. I was surprised to be diagnosed with EDS because I am not that flexible, but I had other signs such as odd scarring, hernias and scoliosis. My sister, however, is extremely flexible. I remember as kids going through the Guinness book of World records and having her try some of the "tricks" ! So, it seems like I got more of the dysautonomia and she got more of the joint instability. It was useful to know about EDS, because after I got diagnosed, it was clear that my mom and my sister had it, too. (People accused my mother of malingering, but she really was in a lot of pain from the EDS). I also learned that my son has a 50% chance of having it as well, but he is too young for a diagnosis.

Hello. In addition to what others are saying, see if you can get an exemption to full time student requirements. I was able to get a medical exemption so that I did not lose financial aid whenever I had to drop below full time (I still lost health insurance, maybe there is an exemption for that, too, or maybe Obamacare fixed that, I don't know. I met someone with cancer who had to stay full time to keep insurance. Go figure.)

I did finish my undergraduate degree, but it did take me longer. My transcript is nothing but A's, B's, and W's. A W is what you get when you withdraw from a class before the withdraw date. If you try that after the date you may get an F unless you can get a retroactive withdrawal. I had a lot of these medical withdrawals, but they did not negatively impact GPA. In this way I was able to keep up my GPA and graduate.

I recently had to quit graduate school, however. If I was to get financial aid other than loans, they required that I work in addition to taking classes, and I have found that I can't do both. I am afraid to take out any more loans because I am not sure I can ever pay them back.

I am currently considering my options as to employment. I have never been able to hold a normal full time job for very long. I am thinking about doing freelance tutoring, as I have experience and I can seen as many or as few clients as I like. (Also, it's easier to reschedule a tutoring session than to cancel an entire class).

Hope this helps!

Thank you Stephanie for bringing up Dr. Suleman. I live in Northern Louisiana and I was at a loss for where to go next for autonomic testing. Well, now I know .

Sorry to hear you have been through so much without answers. Based on your descriptions, it does indeed sound like POTS either with or without drops in blood pressure. POTS tends to be worse after large meals because some blood volume gets shunted away from other areas to help with digestion. I hope this POTS doc can help you out. If not, there is a list of other doctors in the UK that specialize in dysautonomia on the dinet website. Hopefully when you get some answers people will start believing you. It's really hard when the people you love don't believe you're sick.

I, too would like to know more about what is causing my problems. When I saw Dr. Grubb about 9 years ago, he basically said, "Oh, you have dysautonomia because you have EDS" and left it at that. I think there is more going on and if those underlying causes can be found, they can be treated.

Hello Anastasia. When I was first diagnosed, the doctor had me stand up and took my pulse. "Yes, you have POTS," he said, "but, there's not much you can do about it." Since then I have travelled to see other doctors who I hoped had some ideas about what to try to get me more functional. I did get to see Dr. Blair Grubb in Ohio, and he was the one who discovered the EDS. This diagnosis hasn't really helped with my treatment of POTS, yet, but it has helped explain other symptoms that I have been having. It also explained the chronic pain and fatigue my mother struggled with, and the extreme hypermobility of my sister. Currently I am at the point where I want to see more improvement in my functionality, but I am not sure what to do next.