Shiner Kitty

My vitamin D has been as low as 12. I don't feel better with supplements. I have Multiple Chemical Sensitivities with adverse reactions to multiple meds, and I'm afraid to take high dose vitamin D. High doses of some B vitamins have caused bad side effects for a long time, and they're supposed to be water soluble. I saw haloes around lights for a long time after my doctor had me take high dose vitamin B-2 for awhile for migraines. I also believe it caused me to have my first complicated migraine with stroke-like symptoms. it definitely didn't help my migraines, and I ended up in the ER.

My vitamin B12 is low, too. I had bad heart arrhythmias and other symptoms for a long time after taking a high dose of B12 sublingually. I think it was 2,500 mcg. I can tolerate 500 mcg. sublingually (8,333% RDA). My doctor wants me to take 1,000 mcg., but I'm afraid to do that. My Ferritin level also runs low.

I never feel better taking any vitamins or minerals even when my levels go up some. I've also had kidney stones, and I've read that some vitamins and supplements can cause them. I know I need to take them, and I hope I never get anymore kidney stones.

I lost my older half-sister to melanoma, and my younger half-sister has had melanoma, too, so getting vitamin D from a lot of sun isn't an option for me. I'm also very heat intolerant, and I sunburn very easily.

I hope you'll be able to get your vitamin D levels up and feel better. My vitamin D has never been anywhere near 80. I believe my vitamin and mineral deficiencies do play a role in my symptoms.

I'm 43. I've been very sick with POTS/Dysautonomia since I was 23. I had some symptoms as a child that were likely also caused by Dysautonomia.

Thank you! I have all three too.

https://ufhealth.org/news/2013/throbbing-pain-isn-t-matter-heart-uf-researchers-find

Via UF Center for Musculoskeletal Pain Research:

Have you ever experienced throbbing toothache or migraine? Throbbing pain, long believed to be associated with the beating of our hearts, has now been shown by UF researchers to be associated with brain waves instead. It is not yet known how the brain waves cause the pain, but they are believed to act as carriers of certain signals. This finding opens the door for a slew of new research for the treatment of pain, and means that future therapies and medicines might work by targeting brain activity rather than constricting blood vessels to lessen throbbing pain.

http://psychcentral.com/news/2013/06/19/skin-abnormality-may-prove-biological-basis-for-fibromyalgia/56233.html

http://www.eurekalert.org/pub_releases/2013-06/itd-fin061713.php

Via Dysautonomia International-

Very good news... the first Multiple System Atrophy gene has been identified by an international team of researchers! The researchers looked at the genes of families that had more than one sibling with MSA, which is extremely rare. They discovered that having certain abnormalities in a gene related to the CoQ10 enzyme causes a mitochondrial problem that predisposes some individuals to develop MSA. This will likely lead to an acceleration in the pace of research focused on MSA, now that a gene has been identified. There are likely many other genes involved in MSA, but this is an important first step in identifying them. For more information, you can visit our friends at www.MSAawareness.org or you can read the journal article below.

http://www.nejm.org/doi/full/10.1056/NEJMoa1212115#t=article

You've been in my thoughts and prayers! I hope you're okay.

Many people with Dysautonomia/POTS have mentioned having back pain.

"New research suggests that some 40% of chronic lower back pain (CLBP) could be caused by bacteria, and that a significant percentage of people with lower back pain following a herniated disc and swelling in the spine could find relief by taking an antibiotic."

http://www.medscape.com/viewarticle/803858

Thank you!

I'm in an HMO, and my insurance company had one of their nurses call me a few years ago. She was very nice to me, and she told me that she had been assigned to manage my case (or something like that). I think they were doing that with people with a lot of chronic health problems. She said I could call her if I had any questions about my health conditions. I never called her again because I didn't need her help at the time. I can't find the card she mailed me, so I don't know if she's still assigned to me or not. I figured they thought if I knew I could call her first, I might save them some money by not going to the doctor or ER if she could help me, but I'm not really sure. My insurance company even had someone else call me to see if I had scheduled a mammogram yet. Hopefully, that's all it is for you too. I'm sending positive thoughts your way that it's nothing for you to worry about!

I see Jangle gave a similar reply at the same time that I was writing, so that's likely all it is.

They shouldn't be allowed to force you to take PE; there are a lot of reasons students wouldn't be able to participate in that. I can't find anything about Virginia, but students in other states have been able to get temporary or permanent medical exemptions/waivers for PE with doctor's notes. Some students were also allowed to substitute a health class for PE.

I hope someone else can give you some advice about what to do. That doesn't sound fair to me, though. If you aren't able to attend school due to a medical condition, they should allow you to take all of your classes at home, but I don't have any experience with this. Don't be too hard on yourself about graduating 2 years behind. You're doing the best you can.

I do understand how you feel. I was taking Honors classes in college, but I got so sick that I couldn't ever complete my degree. I tried going just part-time, but that didn't work out, even after dropping out for awhile. The last college classes I took years ago, the instructors said that if you missed more than 2 classes or were late more than 2 times, your grade would automatically be reduced to a 50% F! I was so sick that I missed 2 days right away, and it would've been nearly impossible for me to always be on time. I'd already had problems at another college where I was told if I was unable to take the test when others did, my make-up test would be much harder than everyone else's. I was also told that my tests would be oral while the others took written tests. I had severe cognitive and memory problems that would've made oral tests too difficult for me. Yes, they were probably violating ADA laws, but I didn't have the strength to fight with them. All of the stress of college severely affected my health. I've been unable to work due to POTS and my other many medical conditions for 18 years, and I had to give up my college and career goals.

Hopefully, you will be able to make all of your dreams come true, even if it takes you a little longer than others. In my case, I pushed myself too hard trying to be "normal" like other people. I think if I'd slowed down when I was younger (including in high school), I might not have gotten so much worse. One semester, I took 5 college classes, including 3 Honors classes, and I was trying to maintain a 4.0 gpa. I was trying to make up for lost time, and it was way too much for me. I should've only been going part-time, and as hard as it may have been for me, I should've asked for accommodations and accepted less than perfect grades. I didn't have my POTS diagnosis yet, but I had been diagnosed with Fibromyalgia and some other things. I just knew I was very sick, and I didn't know all of the reasons why. It would've been better to have at least finished the degree, even if it wasn't up to my own strict standards for myself.

So, my point is, don't push yourself too hard like I did trying to be like the other healthy students. It's better to do things at your own pace, and only as much as you're able to without exacerbating your condition. People treat us unfairly and they don't understand, but I think they should have to make accommodations for you. I hope others have more experience with homebound schooling and will be able to help you.

I also hope you will be able to find a supportive and understanding doctor soon. I've also had problems tolerating meds.

This is a YouTube video. I keep trying just to post the link to the video, but it keeps inserting the actual video here. I don't know how to change it.

Thank you for sharing this!

I'm also thinking of you during this difficult time. I hope that you and your home will be safe, and I hope you will have a comfortable place to stay until you can return home. I hope this will be over soon with a good outcome for you, your neighbors, and their pets!

I haven't read all of this article yet: http://journals.lww....cations.35.aspx.

I don't think it mentions POTS, but it does talk about autonomic failure, baroreflex failure, and MSA. It includes a lot of information about how someone with autonomic failure may react differently to medications, anesthesia, infection, temperature regulation, etc.

One thing in the article that really stood out to me was: "Liver blood flow in human subjects is relatively posture dependent. In healthy subjects, liver blood flow is only reduced 5% in the seated posture compared with the supine posture. In patients with autonomic failure, the liver blood flow can decrease as much as 30% with upright posture. A consequence of this is that a hepatically cleared drug such as lidocaine may display plasma levels that are dramatically dependent on posture and blood pressure. When patients with orthostatic hypotension are receiving intravenous lidocaine, the plasma drug levels are almost twice as high while seated versus supine, and this change in posture can occasionally result in a toxic seizure despite an unchanged infusion rate.³⁴ The response to various cardiovascular vasodepressor drugs also may be exaggerated, whereas the response to other vasoactive agents is unpredictable."

Like many of you, I've had all kinds of paradoxical and adverse reactions to multiple medications (even ones that I'd previously taken without a problem). I have been diagnosed with Multiple Chemical Sensitivities. I think the reduced blood flow to the liver probably explains some of that.

I just found out last month that I have a congenital heart defect(s) too. I'm 41. That echocardiogram at a local hospital showed a patent foramen ovale (PFO) or Atrial Septal Defect (ASD); they couldn't tell how large the hole was on the echo and a larger hole would be an ASD. It also showed a Redundant Interatrial Septum (which from what I read may be the same thing as an interatrial septal aneurysm and may be an atrial septal aneurysm (ASA)), trace mitral regurgitation, trace tricuspid regurgitation, and tachycardia 100-126 throughout the study (due to POTS and Inappropriate Sinus Tachycardia). I had echocardiograms at a local hospital's heart and lung center in 1996 and at the Mayo Clinic, MN in 1998. They didn't find anything structurally wrong with my heart then. The doctor even came out and checked me himself at Mayo just to be sure I didn't have mitral valve prolapse, etc. I was assured at Mayo that my echocardiogram was normal and that my heart arrhythmias were caused by my autonomic nervous system. Other doctors had sometimes heard a heart murmur prior to those echocardiograms. On my most recent echo she saw thickening in the wall of my heart, and she was very concerned. Then she got permission from me to do a saline contrast bubble study (some of the images were suboptimal quality, though). The cardiologist said the other echos didn't show the congenital defects because I didn't have a bubble study then, but why didn't they see the thickening then if I always had it?

I have had all kinds of heart arrhythmias for years, shortness of breath, chest pain, severe chronic migraines with aura, tachycardia, exercise intolerance, dizziness, and on and on. The cardiologist that I saw last month basically acted like I was wasting her time for even being there. She kept asking me why I was there with an annoyed tone. I told her more than once that my pcp referred me because she was concerned about 3 abnormalities found on my echo and that I have POTS, heart arrhythmias, and Ehlers-Danlos Syndrome, etc. She still kept asking why I was there! She didn't look at any of my symptoms that her staff had noted during a long phone interview prior to my appointment or any of my diagnoses, and she doesn't ever want to see me back again. I'm sure, as usual, that she didn't know about any of my medical conditions. She only said that migraines can be associated with PFOs, but fixing the PFOs doesn't cure the migraines (I read that it does for some people). She also said I'm at increased risk of a stroke. That was all she said. She acted like all the findings were insignificant. She was only going to tell me about the PFO until I pressed her saying my pcp said 3 things. I got the report myself and saw there were actually 5 abnormalities found. The cardiologist dismissed the regurgitations saying a lot of people have that. Well, a lot of people have diabetes or cancer too, but that doesn't mean that it's normal or that it doesn't cause symptoms! I got the impression that that cardiologist rarely actually sees patients. People who worked in the office kept asking why my pcp wanted me to see her and didn't I see another doctor in their office? After I got the report, I saw that she's the one who read the echocardiogram, so my pcp wanted me to see her about it. I probably should have seen someone else. After researching and reading about the possible complications, I do not plan to have the PFO closed. I would like to know if my symptoms are related to all of this, though, and I believe they are. While I read that experts say most people don't have any symptoms other than migraines and the possible strokes, I've read where some people with the defects do have symptoms similar to mine, but they're also told it's not related.

I also have a Chronic Fatigue Syndrome (CFS) diagnosis, and Dr. Paul Cheney has a theory about the PFOs being the cause of Chronic Fatigue Syndrome. He's found PFOs in almost 90% of CFS patients. I'm not sure if this is the same article that I read, but this one does mention the PFO finding in CFS: http://www.prohealth...cfm?libid=16228 . Also, in this link www.cheneyresearch.com/topic/diastolic-dysfunction , Dr. Cheney says that he feels "strongly that the almost 90% PFO incidence in CFS is largely acquired with the onset of CFS and is not pre-existing except in perhaps 27%". So, if Dr. Cheney's right , did I acquire my supposedly "congenital" heart defects after the first two echocardiograms because of Chronic Fatigue Syndrome or did I have them since birth? I don't know, but I did have symptoms as a child, they just got a lot worse when I was older, so I would think that the first 2 echos missed them and I always had them.

I also was recently diagnosed with Hypermobility Syndrome, but I'm sure I actually have Ehlers-Danlos Syndrome. I have features of the vascular type, and I'm worried about that. The doctor who diagnosed the Hypermobility Syndrome really doesn't know about Ehler-Danlos Syndrome (EDS). He thinks everyone who has that has to have the stretchy skin, and many researchers say that Hypermbolity Syndrome is the same as the hypermobility type of EDS anyway. I don't have the stretchy skin, but my half-sister does and so do her kids. She also has mitral valve prolapse. There are other symptoms of EDS in my family, but none of them were ever diagnosed with it. I have wondered if the heart defects found are related to the EDS too, but I haven't been able to find a lot of people with EDS with those types of defects. I still suspect they are related.

I'm sorry you were feeling too weak and tired to go to your son's concert, but you did the right thing by not pushing yourself too much. I'm often too fatigued and weak to go anywhere too, and I know how hard it can be to miss out on important events. I'm sure your son understands. Maybe someone recorded the concert so you may still be able to watch it later. Could you ask? I hope the dietician and the specialists will be able to help you. I hope you feel better!

This is a very good 2004 article from The CFIDS Chronicle written by Dr. Alan Pocinki discussing how Joint Hypermobility relates to Chronic Fatigue Syndrome (or CFIDS), Dysautonomia, Migraines, Irritable Bowel Syndrome, Interstitial Cystitis, Vulvodynia, etc. I searched the forum, but I didn't see this article previously posted.

http://www.cfids.org...mer-feature.pdf

I recently found Pinterest. It's a virtual pinboard. You can browse other people's pinboards or you can create your own. You have to request an invite to create your own pinboards. I thought some of you might be interested in it.

http://pinterest.com/

http://pinterest.com/about/