Bad appointment.

[CallieAndToby]

So for the past 4 months my blood pressure has really dropped and HR still high. I've never had an issue with blood pressure until now. Then for a week I had palpitations every few minutes, I'm supposed to wear a heart monitor...... Anyhow I saw a cardiologist and the only advice he had was drink all day long and I said, "Excuse me sir, I have extreme interstitial cystitis and most days I use the bathroom for 5 hours", and it's like it went in one ear and out the other and he said it didn't matter I needed to drink all day. There is only one specialist in my city and he's not accepting new patients. I also can't drink gatorade as it flares my bladder from citric acid. My mom asked for florinef and he said okay, but I'm always frightened of new meds b/c I get terrible side effects. How do y'all do on florinef? BTW, palpitations NEVER addressed. He also had no clue what ME/CFS was and was telling me to take walks and lose more weight KNOWING I've lost 50 lbs on my own changing my diet; I haven't taken a walk since 2008, it's very harmful to exercise with this disease. I wish we weren't so misunderstood. Anyone else have IC? Mine is extreme. 

[Pistol]

Hi @CallieAndToby22 - yes, I have IC, supposedly from POTS. Mine is bad but I have found improvement by changing my diet. -- From what you describe you surely need an autonomic specialist. Dysautonomia is very difficult to treat b/c we have so many symptoms and are so sensitive to medications, that is why many physicians do not want to even deal with it. I have a few suggestions: you mention that walking is difficult - yes, it is but exercise IS essential in improving the orthostatic intolerance. I am unable to walk more than from one room to the other but I exercise daily on a rowing machine, that works well for me. Exercise improves tolerance and circulation as well as stabilizes BP and HR in many patients. 

I also did not respond to increasing salt and fluids alone, like you it went right through me. That is when my specialist ordered IV fluids to be given when I get bad and it really immediately improves all of my symptoms and I do NOT pee it right out ( I will with NSS but not with LR - which are different solutions for IV fluid replacement ) . Here is an article that explains it - you can show it to your PCP or cardiologist and ask for IV fluids as a trial. 

https://www.researchgate.net/publication/313506555_Effects_of_intermittent_intravenous_saline_infusions_in_patients_with_medication-refractory_postural_tachycardia_syndrome

We started 1 liter weekly over 2-4 hours for one month and the improvement was immediate. Many physicians use this on an as needed basis for flares of POTS and even fatigue, maybe your doc would agree to give it a try. It does not affect my IC - actually it improves the urgency and frequency as well as the night time urination. In my case it stabilizes BP and HR and stops the palpitations. Be well - I hope you will find an experienced physician soon!

[CallieAndToby]

Thanks Pistol. I won't be seeing this cardiologist again. He wouldn't even talk about iv infusions. His entire advice was to drink all day even though I'm tortured by IC and needs lots of rest and sleep because of ME/CFS. The only thing i can do is try to see the one specialist in town; my mom is a nurse so maybe she can drop by in the hospital one day. I used to see Dr. Charles Thompson in Pensacola but he became too sick himself with hyper pots and retired, he was the most helpful and kind, understanding all my conditions. Only thing I'm on Dr. Thompson put me on is beta blocker and that does help. 

[bombsh3ll]

You definitely need to see someone more knowledgeable.

Florinef may be worth trying if you have it and your BP is low. It can cause/worsen palpitations though (but only because it drops potassium, if this is monitored and supplemented if needed, it should not affect your palpitations).

Beta blockers are often an automatic response to seeing a patient with a high heart rate, but are somewhat counterintuitive as they lower cardiac output, blood volume and blood pressure. If you can, I would try and find an autonomic specialist to take over your care in this respect. 

Also, if the IC is preventing you from drinking the amount of fluid you need, have you seen a urogynaecologist? We definitely need our fluid!

I can understand the sugary Gatorade being unsuitable for high volume drinking - I use Trioral which I get shipped from the US, & find it the best in terms of both cost and content. 

I hope you manage to find some relief.

B xxx

[isa5]

Totally agree that you need to see someone with a better understanding of things. Salt and water are important but not the only solution, and someone needs to listen to your IC concerns and adjust treatment plans accordingly.

For what it's worth, if Florinef doesn't work for you, you might have some success with Desmopressin (DDAVP), which reduces the amount of water your kidneys take out of your bloodstream. I take it at night to keep fluid in (I was getting up frequently to pee in the night). You need occasional blood tests while on it to monitor sodium levels, but someone knowledgeable can help with that.

If your BP is low you may also need a vasoconstrictor, such as Midodrine. For me, midodrine, a beta blocker, and DDAVP have been a good combination. My cardiologist (who is good for POTS, thankfully) is trying to combat the tachycardia, the fluid loss, and the venous pooling all at once. I would have said that the tachycardia was my only problem, but he insisted on addressing all three, and the midodrine has actually done a lot to help with the tachycardia and palpitations, even though it does not directly address that symptom. (As I understand it, the tachycardia can be a response to blood pooling in your feet/legs and/or low blood volume; anything you can do to address one or the other will help the tachycardia as well).

I also second bombsh3ll's rec of the Trioral supplements (available on Amazon) for salt loading, instead of Gatorade. These have been very helpful to me, much more so than Gatorade/Pedialyte or any of the other supplements. When I started I thought they were the worst thing ever--they taste pretty nasty--but I've adjusted. Try mixing water with less than the recommended amount of Trioral, drinking it very cold and fast through a straw, and work your way up in concentration, if you can. The very high salt content there seems to help me pee somewhat less, for the volume of water I consume. I also get a small energy bump from the salt--I've read some things that suggest the salt itself helps constrict blood vessels for a short period.

Healing wishes to you!

[CallieAndToby]

I've actually been all over the country about my IC and done everything except for surgery. They told me 2 weeks ago, there isn't anything we can do for you. I've been to Mayo and they did nothing, I've been to shands and they "don't treat IC". I've seen the top IC specialist in the country. This started when I was 6 years old so it's been a long journey. I even have the interstim device implanted for my bladder. I also have severe and debilitating fatigue because of ME/CFS so I really need to rest a lot and not be getting up to the bathroom, IC is already a huge problem in this regards. 

Thanks for the suggestions otherwise. I can order the Trioral. Unfortunately I used to see Dr. Charles Thompson and he retired b/c he got too sick with hyper pots. There is only one dysautonomic specialist in my city and he's not accepting new patients. I'm really too sick to travel any more I can only hope a spot opens up. 

 

 

[Guest KiminOrlando]

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.

[CallieAndToby]

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.

Vanderbilt? I'm tired all the time b/c my blood pressure is low and HR high but today I've been drinking those salt tablets. 

Also, I am seeing a uro/gyn in about a month as well as a neurologist who called me personally and said he could help me. I have severe ME/CFS and a new theory that just came out says neuroinflammation (which I'm diagnosed with) in ME/cfs causes a hibernation state, then lists reasons for the inflammation. 

[CallieAndToby]

I joined an IC group and nobody really understands. I talk about fatiguing disorders and POTS and they all seem to have JUST IC. I tell them I need to rest most of the day so I can't be getting up to the bathroom constantly but they don't understand. And obviously for POTS I need to drink. It's hard, most things irritate my bladder and cause flares, otherwise I would drink electrolyte drinks. Just looking for some understanding. I live with very debilitating fatigue, I have hyper POTS, neuro inflammation, extreme IC, and I have OCD that is latched onto the bladder issues though L-methyl folate has helped the ocd. 

[Sushi]

On 7/6/2019 at 6:47 PM, CallieAndToby22 said:

Unfortunately I used to see Dr. Charles Thompson and he retired b/c he got too sick with hyper pots.

I used to see Dr. Thompson when I lived in Pensacola and he helped me a lot. I hear from friends that he is back in practice though if you don’t live in or near Pensacola you could end up traveling to see him only to find that he has had to cancel appointments that day as he still struggles. Good luck.

[CallieAndToby]

15 hours ago, Sushi said:

I used to see Dr. Thompson when I lived in Pensacola and he helped me a lot. I hear from friends that he is back in practice though if you don’t live in or near Pensacola you could end up traveling to see him only to find that he has had to cancel appointments that day as he still struggles. Good luck.

Yessss. I need to see him. We had a special bond and he really cared and helped me a lot back then. I am 2 1/2 hours from Pensacola which isn't bad at all. Usually we stay for a few days so if one gets cancelled then he can see me the next. Thank you! 

[CallieAndToby]

On 7/17/2019 at 2:09 PM, Sushi said:

I used to see Dr. Thompson when I lived in Pensacola and he helped me a lot. I hear from friends that he is back in practice though if you don’t live in or near Pensacola you could end up traveling to see him only to find that he has had to cancel appointments that day as he still struggles. Good luck.

Dr. Thompson isn't accepting patients. They said there's a 60 patient waiting list. He recommends UAB but I have no idea which physician. And someone here recommended Vanderbilt. 

[Sushi]

4 hours ago, CallieAndToby22 said:

Dr. Thompson isn't accepting patients. They said there's a 60 patient waiting list. He recommends UAB but I have no idea which physician. And someone here recommended Vanderbilt. 

Hmmm. I just talked with a patient who said that she sees him now and then. Did you tell them that you are an established patient with him? I have not heard of anyone at UAB but I supposed that there could be a new hire. Maybe you could ask them for a name. Others can tell you more about Vanderbilt as it is a long time since I considering going there. Hope you find someone.

[brainchild]

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. 

[CallieAndToby]

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. 

[Pistol]

@CallieAndToby22 - I have IC and used to get a medication mix of lidocaine, Heparin and something else instilled into my bladder. I had to leave it in for 30 minutes and then could use the bathroom .It did help some. Maybe that might be helpful to you? 

[Guest KiminOrlando]

What is the name of the doctor at the POTS clinic at Mayo in Jax?

[DriftingDolce]

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!

 

[CallieAndToby]

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. 

[CallieAndToby]

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

[Guest KiminOrlando]

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

[CallieAndToby]

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.