CallieAndToby

On 10/30/2020 at 2:24 PM, MTRJ75 said:

I don't know how I missed this thread. 

@Gail RI did realize I had high quality magnesium packets in the house the second night, took one before bed and last night wasn't as bad. I usually take my CBD drops in the morning. Although I probably need more than I take, the oil is quite expensive and I can't be plowing through it with even higher doses right now. 

Yes I've been having movements since before I was even diagnosed. I even took video of it several times but doctors were not interested. Recently a few seizures. I'm not sure what to tell you b/c I don't know what causes it but I can feel it coming on. I take a Benzo at night and very helpful for symptoms, sleep, and revving nervous system. They did put me on a beta blocker 2 months ago and everything has gone down hill, but I quit it a few days ago, I think it had something to do with the seizures b/c my blood pressure is already so low. Mine is definitely jerking movements also, gets painful, I feel out of control. 

So they've received everything at Vanderbilt but said it would be 4 months before an appt. I really can't wait that long, especially the shape I'm in, it's affecting everybody, and I'm miserable. I do need some sort of accurate diagnosis. I live in North Florida so Georgia is even doable. I know Dr. Rowe personally but he's a pediatric otherwise I'd see him at John Hopkins. 

On 11/3/2020 at 1:27 PM, cmep37 said:

Big hugs @CallieAndToby22 POTS is bad enough but POTS and cancer must be nearly unbearable.

I can definitely relate to this!  I'm 42 and have had severe dysautonomia since I was 26.  My fiancé left me when I was 29 after caring for me through 3 years of severe dysautonomia where I was almost completely bedbound.  I couldn't blame him, he was never going to have a normal life with me and he desperately wanted children which I clearly couldn't cope with!  I have a law degree that I worked enormously hard for and had to give up a job that I loved yet I can't even manage to do voluntary legal work any more. I live with my parents and feel constantly guilty that I am spoiling their retirement but I just am not well enough to live on my own.  I try to exercise but vomit every time I take a 10 minute walk as the rise in my heart rate triggers a gag reflex.  I try so hard to think positive and I have improved a little - I am housebound rather than bedbound but leaving the house for any more than a couple of hours triggers a major flare.  No medication has worked for me and no doctor seems interested in helping me so I just keep muddling on in the hope that one day things will get better....

I'm sorry. Yes my bf right now wants children and I'm like, can't give that to you right now. 

Well I'm too tired to read or do my music, but I take photos when I can then I spend time editing on my computer and adding to groups and Flickr and instagram. 

Also, I've been watching reaction videos to music and it's quite entertaining. Listening to music as well. 

I would suggest something creative. That's been the most therapeutic for me. 

So this is what I posted on Facebook and got no responses: 

"Hello everyone. I'm in a bad situation and I don't know that Hyper POTS is the correct diagnosis (I have had a tilt table test). When this all started in 2008, I started running on adrenaline 24/7 for an entire year then I crashed and spent the next year bed bound and the next decade stuck at home. I had a chance to do IVIG for something else and that really solved the dysautonomia problem. But now it's back and I think being diagnosed with Essential Thrombocythemia, which is blood cancer, my platelets are too high, and the medication I was on and then ripped off of, has triggered some kind of beast. So again, for 2 months running adrenaline, then for the past 2 weeks, 2 seizures, crashing, severe mental fatigue (I don't feel the physical fatigue), standing up and doing anything I get very sick. Now here where the problem really lies, I have severe interstitial cystitis, I can't drink much and I can't drink sports drinks, when urine hits my bladder and I've been drinking water, it feels like acid, the burning, urgency, never feeling empty, so I'm in a bind. I went to my neurologist yesterday and he said the seizures were from dysautonomia. What happens with me is I have resting HR of 104 but upon standing (last they checked) my blood pressure dropped very low and my HR went up to 140; I'm on a beta blocker now but my blood pressure still so low. Nobody will do saline iv's and they help. So I have severe dysautonomia I believe was triggered by the cancer medication, I have chronic blood cancer in which my platelets get way too high, and I have interstitial cystitis/painful bladder syndrome. Does any of this sound familiar? I do the smallest of tasks and I'm just crashes, exhausted. Also, no stimulant will actually work, all of them including adderall make me very very tired, crashed, sick, even caffeine sends me to bed. My records are being reviewed at Vanderbilt so I'm hoping I will get an appointment. I just turned 35, no husband ever, no kids, no ability to work, I just want to take a walk without feeling like I'm dying afterwards, I want to work!!! I'm a great photographer, but I need to finish schooling as that got interrupted by this stuff! I should note that the bladder problems started when I was just a small child. If anybody can relate to something, please let me know!"

2 hours ago, Pistol said:

@CallieAndToby22 - seizures CAN be a part of CERTAIN types of dysautonomia. I take seizures caused by HPOTS, mine happen when the blood vessels to the brain suddenly constrict so severely that there no longer is any circulation to the brain. I respond by an aura of sluggishness, blank stare and then full seizures with extremely arched back and stiffening of all of the body. They last about 30 to 60 seconds. Lucky for me one similar event was caught on long term EEG and they could figure out what the cause was. Prior to the diagnosis of autonomic seizures I had to go through testing for epilepsy - and I believe that all seizures will ( and should ) be approached as that first. That means that you should see a neurologist about the seizure and get all tests they normally do for new onset of seizures. 

Did the ER tell you that you had a seizure? Usually when a patient has their first witnessed seizure the ER just makes sure you are safe, if you have a severe seizure while in the ER they may have to administer medications to stop it. Then most patients get either admitted for further testing ( depends on many factors ) or they are sent home to see the PCP to be evaluated for seizures, which commonly leads to a referral to a neurologist. 

There are several other causes that can lead to seizures, that is probably why they checked your labs. If there is concern for seizures being caused by something going on in your brain they usually do a CT scan. As you see - to determine the cause of seizures is a long process and need to be followed-up by neurology. 

I am sorry you are feeing so scared and feel that your doctors are not addressing your health issues. Please know that these things do take time, for all of us. I believe a referral to Vanderbilt takes time also, if you feel your doc has not sent the referral then I would continue to call his office checking on the progress of the referral. 

 

Thank you for the information and the response. I did google autonomic seizures last night but I was out of it, I'm out of it now. I have H POTS too. I have to go to the bathroom a lot b/c of IC and it completely wipes me out. If I stay here in Tallahassee, I'm going to die, or continue to have no quality of life. I've been sick since I was 17 and at 18 I woke up definitively sick. I have no energy and my birthday is Saturday. I'll eat some cake I guess. Doctors have never listened to me, especially male doctors,  I told them I was sick, they sent me to psychiatrists and I'm just now getting off of this mess. I've lost my entire 20's and half of my 30's, I still want a family. IDK what I'm talking about. Will make 100 hundred phone calls today. Oh yea they diagnosed it as non epileptic seizure and for hours I continued to have jerking movements and involuntary movements, they couldn't understand It and I couldn't speak to tell them but I mustered out that I needed fluids. The ER doctor said I was stressed over the pandemic, LOLOLOLOL, I was bed bound for a year in the dark and stuck in my house and yard for 10 years which is when I learned photography, I don't care about some pandemic keeping me in the house or yard!!!!! 

Guys I've posted that I really need help with my dysautonomia. I don't know what to do any more b/c Vanderbilt still hasn't received a referral from my doctor. 

Yesterday I got a nap and I felt good. Then I came home and walked around some, then sat in the recliner. I was completely relaxed and felt severely ill. So I laid down. I knew something was wrong, I managed to text my mom and she and my aunt came home. 

They witnessed me gasping for air thinking I was having a panic attack, but I had a seizure. The thing is I think it has to do with the dysautonomia. The ER did NOTHING. But I asked for fluids and after taking in a bag the movements went away, just like that. The ER doctor came in and said "your labs are beautiful" and I told him off, I said you're sending me home with a 5 out of 100 quality of life. I told him I needed to get to Vanderbilt autonomic clinic and he said he couldn't make it happen. 

Are seizures related to dysautonomia? I don't have epilepsy. Also my cancer is going untreated, I could be progressing, but who would know!!???

Edit: I did hear the EMT's talking to the doctor later and they said my speech was slurred and all I said was "my name is". 

I'm so tired, sleeping all the time, I get up and feel hot and sick. I really need help. I started taking my beta blocker again and it has helped. 

Thanks. They never called so right now I have an appt with Dr. Thompson's new intern in pensacola. 

Thanks guys. I started thinking about my health timeline. For awhile I was high functioning and I was dealing with the chronic cancer and Interstitial Cystitis and I went into remission for about a year. Then BAM I woke up and was running adrenaline all the time. Nobody believed me. They did my vitals and I was at a constant 125 HR. Instead of sending me to cardiologist and I suggested a beta blocker they sent me to psychiatrists who just drugged me to get me to sleep, because I couldn't sleep. I'm now faced with getting off all of these psych meds. Withdrawal is very difficult. 

After running on adrenaline for a year, I ended up bedridden for a year. Then the next 9 years I couldn't leave my house/yard b/c I'd faith or be so fatigued. I think ALL OF THIS was some form of Dysautonomia. Again wrongfully diagnosed with chronic fatigue syndrome, the Dysautonomia has always been put on the back burner. I realized the other day I felt fine when laying at bed but when I get up and start to do things I get very ill. I also saw a urologist about IC and he said "I think your nervous system is all messed up and it's affecting your bladder". Now God brings to mind Vanderbilt and I did a survey on their website and they ask tons of questions (2 pages) about: "When you were having POTS symptoms did the doctors ignore you and claim is was psychological and send you to a psychiatrist?" YES! 

At this point the cancer is being treated and it's chronic, what can I do? They don't know what to do about my bladder but I think it's connected. I decided to ask for a referral to Vanderbilt b/c I think getting help with the hyperagernergic POTS or whatever it is (may have been mis diagnosed) will be the answer to me getting better. I swam all summer and that didn't help any. I can't take walks though and we visited a museum in Jacksonville, FL, I had to be in a wheelchair. Upon standing after laying down 20 mins and with a broken vitals machine, after 15 minutes standing my blood pressure was 98/51 and my Heart Rate was 140. 

I hope to go to Vanderbilt and get REAL help. I'm super sick getting off of these psych meds and the cancer but I have no choice. Florinef made me extremely ill. There is another they can't give to me because of my bladder. I can't drink gatorade b/c of the acidic acid that literally burns my bladder and flares it. It is unfortunate that I have suffered from this stuff since I was 6 years old but I think aiming at the Dysautonomia might just be the best bet. Also, ivig was extremely helpful with POTS. 

Any suggestions? 

14 hours ago, KiminOrlando said:

It is common to not be allowed to change physicians within the same practice. You may need to switch practices.

What med is your insurance company not willing to pay for? Is it because they don't pay for that med or because they don't pay for that med with your diagnosis code?

Yes it's common. There's only one oncologist that knows about men's and they won't let me see her. It's plain insanity. There is no other practice btw. It's just this one. Monopoly. 

I want to say the med is nuthera? But every time she prescribes a pill like florinef I get crazy awful side effects. I know the saline bags help with no side effects. I know that the male doctor knows way more than her. 

Malpractice.  

Hello everyone. I recently went to my cardiologist's and laying down I had 104 HR then standing my blood pressure was 98/51 and 140 HR. I asked if we can do saline iv's, they refuse to do it!!!!! It's a female doctor. They asked about some medication they tried to prescribe and I repeatedly told them that insurance WOULD NOT COVER IT. Now I'm in a situation. I was diagnosed with cancer earlier this year, I have horrific Interstitial Cystitis, and  hyperadrenergic pots. I'm fatigued ALL THE TIME and I realized the POTS is really contributing to this. I'm going to see an IC specialist next week, my oncologist is at Shands but I can't go often b/c I'm so sick, and this cardiologist won't let me see another doctor in the practice who knows a lot more about dysautnomia. I can't go to Vanderbilt, I barely get any money from govn. People have to take off work to drive me. I don't want the covid virus and my immune system is down b/c of cancer and the cancer medication. I live in Tallahassee, FL. Does anyone know what I can do? This is INSANITY AND MALPRACTICE. They had nothing to offer and I left that appointment empty handed, should I really be lying down and getting up with 140 HR and low blood pressure??????? My mom tried the saliva iv's but I will need a port and it HELPED HELPED HELPED. I can't drink these electrolyte drinks b/c they BURN and FLARE my bladder. Also, I swam all summer and that made no difference. All the Dr. suggests is: compression hose and drinking gatorade all day long, well I have IC, I have to sleep and rest a lot. I'm fed up. 

Yes I figured out it was hyponatremia and called my PCP. We're basically waiting on the labs I got drawn this morning. Terrible terrible disorder. Do you guys know if it can increase your other medications, especially psychotropic meds? I'm going to contact my psychiatrist. Thank you. 

I have no idea why my urologist put me on this knowing I have dysautonomia. 

Yea it doesn't stay long. But honestly nobody is helping me. I'm not sleeping, I'm extremely over sedated, I feel very very depressed b/c I can only lay in bed. Passed out twice. It has done something with my medications. 5 days off it and no better. I need help. I can't even start cancer treatment until this is taken care of. 

After a trial with nocdurna my medications are suddenly all very very sedating. I'm sleeping all night and day. I can't stay awake. I guess I have to break everything down to miniscule pieces. I will call my psych. Has anyone had this happen? It's very odd. 

I took for 3 nights. I can't stay awake. Incredible fatigue and sleepiness. I keep calling doctors and not getting response. It feels like my brain is way over sedated and my meds aren't leaving my system. Medication has done something to me. It has something to do with depleting electrolytes and salt. 

Does anyone know what these "light chains" mean? I never could understand. 

Tested by first hematologist: 
gamma globulin 0.7 LOW
Kappa 154 LOW
Lambda 84 LOW 
 

I don't know what it means, nobody has explained this. But I've been diagnosed with bone marrow cancer (ET). But there is some connection with the POTS and my immune system. I have a telemed appointment this week with a world renowned mpn expert, thanks for reminding me, I will ask her about this! My IgG is low too. We have like the opposite but still hyper POTS and I have terrible IC / embedded UTI, OCD, and chronic cancer. We need to solve this guys, my quality of life sucks. I feel drugged all the time now too b/c the docs just put me on crap downers to sleep and ALL stimulants, including caffeine make me sleepy and I fall asleep. 

So my ridiculous cardiologist won't do saline iv's. I need need rapaflo even though it can lower blood pressure. My bladder is HORRIFIC and it's the only med to help so she prescribed northera. I don't know if that's a good combo or what. If my bladder weren't so bad I could drink more. I was about to pass out the other day in Target and I got a gatorade which is a big NO BURNS LIKE ACID IN MY BLADDER drink, but it helped a lot. I drink a lot of water with the salt tablets but that isn't cutting it. Bystolic is the only thing I'm on at the moment. 

On 4/27/2020 at 12:51 PM, KiminOrlando said:

@CallieAndToby22

That's good. I'm glad you are going for another opinion. It sounds like you have done your research and the place in Texas is going to be able to get to the bottom of it. Sometimes you have to push back. I can't believe they dropped the diagnosis of cancer on you then said do yoga. That must be doctor speak for, "We don't really know what to do." If you don't mind, please update us on how you are doing. I think that the autonomic nervous system is involved in bone marrow. I don't know if it would pertain to this.

I hope they find that it is just something out of balance or a temporary result from a medication and it is reversible.  I pray the doctors at Moffit were mistaken. 

Hello all. I have not been doing well. I'm on way too many medications and I just rested for 3 hours unable to nap, and I feel like a complete sedated zombie. I'm hoping to also find someone at San Antonio UT who can help with my medications, I need to start all over. I have an appointment with Dr. Scherber next week! I will have to mention the hyper POTS diagnosis. 

12 hours ago, KiminOrlando said:

Wait. I have thrombocytopenia and I don't have cancer. What happened now? Oncologists like to call stuff like this cancer, but mine wasn't. They did the same to my best friend. Is there more? Is your ANA positive? Are they saying you have PV? Did they just assume cancer because of thrombocytopenia and JAK2 positive?

I am balancing on the edge, but it is because of my autoimmune/dysautonomia. 

Oncologists are used to treating cancer, so their habit is to default to cancer as a diagnosis. I know Moffiit and I know they have a good reputation.

Orlando Health literally just scared the snot out of my best friend after her bone marrow biopsy in January. After getting a second opinion and requestiong additional testing, she doesn't have cancer, but they initially told her it was leukemia. Orlando Health was willing to do more research. I went through this last year with Florida Hospital. They are paid to be extra cautious. They also did more research. I felt like I was challenging him, but after discussing my research with him, he did his homework and came back with solid answers.

If you have PV, my understanding is that there is treatment. It may be plasma pharesis (?), but I'm not sure. I'm sure a support group would be beneficial. 

Also, I think the standard of care has changed and they don't give any kind of sedation to adults for bone marrow biopsies. The last one I was scheduled for was to be done in a doctor's office which I thought to be barbaric. I managed to get out of it, for now.

I hope you end up like us. We know we are more likely to develop cancer, but don't have it yet. 

Please let me know.

What I have is considered an MPN. Which are bone marrow cancers or also called blood cancers all chronic. I have essential thrombocythemia, my platelets are too high, they're clustered, they're big, my marrow is making too much of all the rbc and wbc and plt. So you can research MPN if you want but I have no heard of what you typed out. And yes 3 times jak2 positive. I've decided to go see a special doctor in texas who actually cares about patients' quality of life, who specializes in mpn's. This cancer makes me very sick, very debilitated, I don't have pv or mf so they say "your platelets aren't high enough for hu" but dear god do something. 

Hi all I do have hyper POTS and IC and I was diagnosed with ME but I think we've found the root cause of fatigue. My platelets have been high since 2005 around when I was a teenager and got sick but not alarmingly so it was ignored. Finally my NP sends me to hematologist/oncologist. I was just at Moffitt Cancer Center after getting bone marrow biopsy (without sedation). I am Jak2 positive, essential thrombocythemia, which is a type of chronic bone marrow cancer. I was going to give up because I described my symptoms and the doctor told me: aspirin, yoga, and exercise. Walking through the lonely corridors of that place, being told to do yoga when I'm completely debilitated, and noticing I'm the youngest one (34) was and is very difficult. Good news is there are MPN specialists that focus on quality of life, I will be calling tomorrow to see if I can see one of these doctors at UT. So I haven't been on here in awhile, sorry, dealing with this stuff plus my grandfather is battling throat cancer and my mom is a nurse during this covid time. 

I know a pregnant lady taking her little 3 year old and husband who is sick to Sea World. She wrote out a paper declaring that God will keep them well. As a christian, I find this ludicrous. I mean if you want the virus the best place to go is probably Sea World. I don't know what to say to her without sounding mean. 

The local cardiologist is not accepting me. And today I got diagnosed with iron deficiency anemia which has only showed up on basic labs as high platelets. Finally someone realized they've been high since 2005 and sent me to a good hematologist. I'm just frustrated, it's pieces of a huge puzzle and I don't think this will get solved. Nothing can be for ME/cfs unfortunately, but something can be done about the IC which we're looking into embedded infections, and something can be done about anemia, but I STILL CAN'T FIND AUTONOMIA SPECIALIST. I live in Tallahassee and can't go on long trips I've gotten so fatigued. Is there anyone in Jacksonville? Southern Georgia? 

I also need an mri of my back to check if my spine is affecting bladder. I need someone who can read a PET brain scan and nobody at Shands could. Signing off, incredibly tired. 

Yes benzos help me a lot, mostly with ME/CFS post exertional malaise. Fatigue and brain fog. I don't know about the hyper pots.