I had to get a lawyer. They don't charge you, just take part of the backpay. 

I never saw a doctor but I had to go in front of a judge and explain everything to someone who knew nothing medical. At the time I was battling autoimmune encephalitis, hyper pots, interstitial cystitis, and I have ME/CFS. 

They just sent me a letter recently to see if I've improved and truth is, I can hardly leave my bed. So we'll see what they say. They are very mis informed about chronic illnesses. Best of luck appealing. 

6 hours ago, Pistol said:

@CallieAndToby22 - I am glad, I have no doubt it will help. Let us know if you feel better - and hang in there! 😉

Well my last cardiologist refused to do iv infusions and it has helped my friend so much. Do you meet people with IC as well? I can't drink much, I just can't. Because of ME I have to rest a lot and the IC already makes me go to the bathroom a lot, I drink as much as I can, usually salty water with the salt tabs. 

3 hours ago, Pistol said:

I am sorry you are going through that. In most cases of low BP and tachycardia ER's administer IV fluids, since both symptoms together can indicate dehydration, and the fluids are given to increase BP and therefore decrease HR. This alone should - in my experience - qualify you for IV fluids. This is the only treatment that is effective in my case, to treat an exacerbation of POTS - whether it is high BP or low BP.  Many doctors do not like to give IV fluids for POTS, however with your symptoms it is an appropriate treatment, even if you did not have POTS. So I do not see why you should be refused to receive them, if you would ask for them.  

I'm going to try and get them. I got in touch with that doctor and I know he does saline iv. 

So I'm pretty much doing everything I can for hyper pots. But today my blood pressure was extremely low and I was tachycardic (I was at a hematology appt). I have not tried saline iv's or some of the medications. I have severe IC so I can only drink water or salty water and I just plain and simple can't drink much. I need a lot of rest from also suffering from severe ME. Anyhow I live in Tallahassee, FL and I've seen Dr. Cox there are many treatments she won't do. I've been calling another guy all day and they don't pick up. I can't travel to vanderbilt or some far place bc I'm just too ill and we don't have the money to do it. Used to see Dr. Thompson in Pensacola but he started a new practice and not seeing any new patients. Any recommendations for someone in North Florida, the surrounding area, or south GA? I should add that the most helpful thing for my pots was ivig but insurance would only pay for 6 months because it was for another autoimmune disease. 

I get it too but I thought it was always ME/CFS. I do a few things on my computer and my brain loses energy and I crash. I don't know what to do. 

I'm a photographer who can't work. So I've tried selling online at etsy and nobody buys then on getty and nobody buys. I get $500.00 a month from the govn and I have $50.00 in my bank account and 3,000 on my credit card. Also, I was in a fender bender and I have car insurance with collision but now they're saying there is hidden damage and they won't pay for it. I don't know what to do honestly. I have to eat a certain way and it's getting expensive. I have medication and supplements to pay for, doctor's appointments. But I don't just have hyper POTS, I have very severe Interstitial Cystitis, Insomnia, and I have Myalgic Encephalomyelitis which leaves me in bed most of the time. I don't know what to do. SSI is BS, I got sick at 18 so how could I possibly have much work experience as a barista while in college then end up bedridden? 

I'm having a lot of trouble with MM. I've tried tinctures, vaping, and cream. All of them give me horrible headaches, wired but tired feeling so I can't do anything. I have been trying indica at night and having very troubling nightmares. I have IC (bladder pain syndrome) and I literally live in horrific pain and no doctor will give me anything. I use a heating pad all the time and I've got wounds and burns and discoloration. Someone suggested edibles. IDK. Didn't really affect POTS. 

12 hours ago, Derek1987 said:

By the way, nice cover. I cant sing.

Thank you. I like your cover, nice to hear some electric guitars as I only play acoustic. 

12 minutes ago, Pistol said:

@CallieAndToby22, @Derek1987 - thanks for sharing! Very impressive! I can sing but cannot play anything. I do write poetry though. If I can dig up some stuff I may post it here. 

You should definitely share your poetry. Art is therapy. 

Here's a version of Silent Night I recorded the day after Christmas, lol. 

Also recently I entered a fine arts contest locally at university and my photograph was accepted. 

On 7/17/2018 at 4:53 PM, zerohours000 said:

I was told my doctor to not take b12 methyl.  My b12 is already above normal (926) but I suspect it’s because I’m not absorbing it due to an underlying autoimmune disease (not diagnosed).  Early on I had a myriad of symptoms that fit b12 issues.  I still do.  There is something called Functional b12 Deficiency, but my PCP doesn’t think that’s it.  But he couldn’t know this, I think, without running certain tests.  

I can't take normal B12, makes me quite quite ill. But when I use methyl B12 which has to be used with methyl folate, I don't have side effects. 

Oh yea 2 years of experience. I have ME as well. I have tons of genetic mutations but my doctor put me on the mehtyl folate and we added B12 and niacin. They changed my life, I went from being homebound to leaving the house and having boost of energy and my ocd reduced by 75%. I do have one of the MthFR homozygous mutations. I had to quit taking them for the most part b/c of insomnia side effects, however very soon I'm seeing an ME specialist down South Florida and she heads up the ME gene study and does genetic medicine so I'm hoping she can really help. However to answer your question, never helped my POTS. 

Photography is one of my hobbies so I have lots of pictures of these pups. Sammie, Toby, Callie with Toby, Jake. 

I have ME/CFS and POTS and IC and OCD. I live with terribly debilitating fatigue. Klonopin is great for CFS. So it's good he's taking that, just in case. IF you have any questions don't hesitate. I can say that you can do genetic testing through 23&me then run it through geneticgenie. At that point it may show a genetic mutation to MTHFR, I have it, so I was prescribed methyl folate and there are other like deplin, it boosted my energy and got me out of bed and it reduced my OCD by 75%. 

HI, I've found someone. She is an ME specialist, probably the smartest, but she does tilt table tests and knows A LOT about POTS and dysautonomia since most ME patients have it. 

I'm very excited she can help with my ME as well. Dr. Irma Rey heads up the gene study and does gene medicine which is the route I need to take. Methyl folate has changed my life. Klimas and Rey have done the biggest methyl folate study specifically with ME patients and they will know how to help with the side effects. Just thought I'd elaborate if anyone else here suffers from ME/CFS. 

Hi guys, sorry I haven't been around in awhile. Someone who was close to me treated me with more cruelty than I've ever experienced, I figured out the other day with some research he was just manipulating me the entire time. 

Anyhow, I have severe IC and I NEED the rapaflo. It's the ONLY thing that helps. But it's an alpha blocker and lowers blood pressure. My neurologist can't get me in with the local guy and vanderbilt won't accept my referral so I'm looking for someone in North Florida. I'd love to see Dr. Randy Thompson again but he's not accepting new patients even though I was established with him. I really need to see the ME specialist Dr. Klimas for several reasons including this one but she isn't accepting new patients either. Any tips? 

Of course. I took bactrim for 2 weeks and it decreases my sleep meds and in and of itself causes horrible insomnia. So Walgreens was supposed to fill something to help with sleep and they haven't. It sucks. I had adrenaline 24/7 in 2008 and went the entire year without more than an hour a day of sleep. 

Also, I have a new neurologist who comes from Vanderbilt. He will send me there if need be b/c he says it's one of the best. 

Well I have autoimmune hyper POTS and the only thing that helped me was IVIG. I think you have to have certain auto antibodies come back positive though to get it approved, as it is very expensive. 

On 8/20/2019 at 2:30 PM, KiminOrlando said:

Let me know how that goes. I still stand by my Vandy recommendation.  It would be nice to have someone close.

Well I have a really good neurologist now and he comes from Vanderbilt. But he wants me to see a local guy who isn't accepting patients who is really good, he said, "he owes me a favor" and IF that doesn't work out he'll send me to Vanderbilt. He thinks I have autoimmune POTS because the best thing to help me was IVIG but I was taking it for a different diagnoses, he'd like to see me on it again if the auto antibodies come back positive. 

So I used the salt sticks for a few weeks along with aloe vera pills. My bladder went downhill and I didn't know what was going on but I was going to the bathroom every 30 mins. It wasn't a UTI and I told my mother, it doesn't feel like a UTI it feels like my bladder is irritated. She looked at my new supplements and noticed the salt sticks have potassium which is horrible for IC. 3 days now stopping new supplements and I'm feeling much better. 

So here's a little detail on the newer alpha blockers: "

Alpha blockers. These medications relax muscles in the urinary system to ease the flow and reduce sudden and frequent urges to empty your bladder. The dose of an alpha blocker is stepped up gradually as you remain watchful for side effects, such as nasal congestion or headache. "The ideal is to get to the most effective dose without bothersome side effects," Dr. Barry says.

The older alpha blockers doxazosin (Cardura) and terazosin (Hytrin) can cause lightheadedness or fainting from a sudden drop in blood pressure. The newer alpha blockers—alfuzosin (Uroxatral), silodosin (Rapaflo), and tamsulosin (Flomax)—tend not to affect blood pressure."

The ONLY thing to help my IC was rapaflo but it lowers my blood pressure. Is there any way to combat this? I can't keep going to the bathroom for 4-5 hours a day. 

I was diagnosed with autoimmune encephalitis and treated with ivig for 6 months. The only thing it helped was my POTS. It's very hard to get approved because it's so expensive but I wish I could try it again. Will be asking my new neurologist. 

On 7/6/2019 at 9:54 PM, KiminOrlando said:

I really think you need to get referred to Vandy. Good chance your IC is from dysautonomia or at least, it is all related and the rest of it is disease progression. I know you said no more travel, but Florida offers no good options, imo.

Fred Kusumoto, M.D

On 8/14/2019 at 3:16 PM, DriftingDolce said:

I have IC, ME/CFS, and POTS too! You're right, most IC forums/groups only talk about IC and don't seem to address other related illnesses.

Weird question: Are you taking any kind of birth control?

My IC was HORRIBLE. Constant agonizing bladder pain all the time. And it's an agitating kind of pain. With POTS headaches and fibro pain, I can lie down and do nothing and that often calms things down, or at least makes it more bearable. With an IC flare, I can't settle. There's that constant urge to go to the bathroom, even if you just went, that makes it difficult to relax at all. 

A few years ago, we made an accidental discovery that improved the IC dramatically: my bladder hates birth control! My ME/CFS doctor suggested that I go off birth control to see if that was making me more fatigued. It had no impact at all on my fatigue but it made a HUGE difference in my IC pain. Now I still have IC, but it's much more manageable. I've tried every possible kind of birth control (pills, patches, IUDs both with and without hormones, etc.) and all of them immediately provoke the worst IC flares. If you are on any form of birth control, I highly recommend going off it for a month or so and seeing if that gives you any IC relief.

Also, do you use heating pads? You mentioned that it's hard to rest when you constantly have to get up to go to the bathroom and I so relate. I'm pretty much chained to my heating pad, especially during a flare. At night I wrap it between my legs and over my pelvis every night and that dulls the constant urge to pee so I can get to sleep. Hot baths sometimes help too.

Other things that have helped me: IC diet, pyridium, condom pops, bladder instillations, seat cushions with holes in the middle, pelvic floor physical therapy. You said you've already tried everything though, so I'm guessing those aren't new. I'm currently on week 3 of a 12-week PTNS therapy for my IC - hopefully it helps!

 

I am not on birth control. Been alone for a long time b/c of all this crap. But I'm glad you made that discovery for yourself. I am also attached to a heating pad the problem is it has caused bad discoloration and wounds and burns and they tell me to stop using it but nothing else helps. Rapaflo helped a lot but side effects, drops blood pressure. I've figure out the things that help are things that relax the bladder. I believe I'm having spasms. But why didn't botox help? I have tried many installations and they burn my bladder now. Rapaflo relaxes the bladder neck and other parts of bladder. 

Yea they said since he started a new practice it wouldn't matter if I'd seen Dr. Thompson in the past. I'm being sent to Mayo in Jacksonville to see the doctor who heads up the POTS clinic. Please give any experiences on this! 

21 hours ago, brainchild said:

Have you looked into mast cell activation syndrome? I’ve done reading on MCAS and there is a connection with IC. May be another avenue for finding relief. Some of the first line meds are OTC - of course you should check with your doctor before adding new meds -  but they’re accessible.

Here is just the first thing that came up googling MCAS and IC:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4893522/

I don’t have IC, but I am suspected of having MCAS and have had significant help with adding both H1 and H2 antihistamines. The first thing I noticed was an ability to move around the house more like I used to - as in not exhausted just walking from room to room to do basic home life things.  We’re all different, but it seems like something to check on for some relief for your IC symptoms. 

hope you find the help that you need and find some relief and ease. 

Yes I was diagnosed with mast cell, I tried every OTC med and then prescription medication and nothing seemed to make any difference at all. I'm really in a bad situation. Nobody will give me anything for pain except anti depressants that cause bad weight gain. My bladder is so bad it seems like my days are just going to the bathroom a BUNCH then resting. I saw a very competent IC doctor and he was really stumped because I've tried everything. I'm very overwhelmed. And I have ME/cfs, right now I'm running on no energy after resting a lot today. I can't do anything or get anything done. If I do something my energy drains very quickly. And on top of everything I'm lonely, I didn't expect to be single for so long; the only positive is that I'm seeing a good neurologist at the end of this month.