zerohours000

8 hours ago, StayAtHomeMom said:

ANA?

@StayAtHomeMomNot to butt-in but I just had my ANA back it was relatively "low" --- 1/40 --- but what does that even mean?  My doctor said it wasn't something that jumped off the page, given my other symptoms, but I made an appointment with a rheumy anyways (who may just shrug their shoulders all the same).  Thx

Got my ANA back, and it was 1-40 titre --- which I was told was not really enough to suggest autoimmune (as a small % of the healthy populous can test positive for this, and a larger number would be more out of line, like 1/360).  However, I've also read that the number could indeed go higher if it is autoimmune.  I suppose the issue is I don't have any symptoms (yet) to go along with this.  No joint pain or fatigue per se.  I'm only 4 months into feeling this way, so who knows.  If anyone has better info, or has gone through this already, I'd love to hear.  I have a rheumy appoint on the 31st of July.  Maybe they can shed some light on it as well.  Very frustrating to feel this way and not have an answer (but suspect one anyhow).  

2 hours ago, Shane said:

Went to BIDMC today, had my tilt (45 min) repeated, Valsalva, a palm/foot skin potential shock test. I tolerated everything well, only got slightly dizzy for about 5 seconds on tilt. The technicians did the tests not the Dr.s which I was disappointed about, but if I read between the lines from their comments is that I had the proper responses and went so far to say I would make a good physiological specimen for normal results.  Unless they were just blowing smoke at me (I doubt it) I think all negatives.  They said I'd get a call when the Dr.s reviewed the findings. I guess this is good news with a negative tilt at Yale as well. It seems the HR stayed around 90-100 and BP 120/75 can be ruled out as they didn't seem to spike/drop. Only worry here is they don't do the QSART but I don't really know what that would show as I seem to sweat normally.

So with all negative on cardiac, pulmonary, and endocrine, still can't explain the fatigue (especially before 5pm), almost fall asleep after meals, low body temps, morning chills, poor temperature regulation, heat intolerance, high level of unconscious anxiety/startle and SOB/hyperventilation. 

Thinking of having this PCP prescribe Wellbutrin as maybe there is a psychogenic angle, can't hurt to trial as it should give me energy and reduce anxiety. Only other possibilities that seem remote like sleep disorder, gastrointestinal, autoimmune, metabolic, I guess ...who knows I'll just keep turning over rocks.

 

Hey!  That’s good news.  Yeah, the doctor doesn’t do it.  The technician even went as far as to ask me “Why do the doctors think you should have this test again?”  Keep us posted.  I also had a normal TTT at BIDMC.  Just remember: there are non-POTS Dysautonomias.

How were your b12 levels again?  

It’s also interesting that you get fatigued and I have yet to get tired after all of this.  I can’t sleep and never feel exhausted (wish I could).

I don’t hold out much hope for the psychogenic.  It’s an iffy and highly questionable area.  It’s different than somatic pain I think, and should be met with some skepticism.  

On 7/9/2018 at 2:12 PM, RecipeForDisaster said:

I'm sure I have MTHFR too. My levels are about 2000 and my hematologist is not concerned about it even though I haven't been tested for that mutation (he says it's so common it's not worth looking for-I don't know, but he didn't want to bother testing). I had exactly that scenario and take the methyl version of B12 and folate,

I have the methyl but not the folate.  Though I’ve never taken them because I bought them the day before I found out about the high b12 and would like to know if there’s a reason it’s staying in my blood.

On 6/18/2018 at 1:31 PM, Apple86 said:

Hi Haenir, 

I've had severe health anxiety all of my life and so when my PoTS symptoms started (aged 31) I had a massive mental health breakdown and couldn't leave the house because I was fearful of everything and everyone, and I was convinced death was close. I was definitely existing in a non-reality - it was beyond scary. Now, six months later, I'm back to more positive mental health due to an SSRI called Citalopram. It doesn't work for everyone and it does take a while to feel the full effects, but if it does work then it's a life changer.  I started noticing the real effects about five weeks after starting it. I started at 10mg and then went up to 20mg after the first two weeks (if I had started on 20mg I would have felt the positive effects sooner). If you can, go and speak to your doctor about it. Sertraline is another SSRI, which works in a similar way to Citalopram. 

I'm currently awaiting my TTT (knowing that I have PoTS) but my anxiety around it is so diminished by the SSRI. Without it, I would probably still be living in terror everyday. 

xx

That’s very interesting.  I don’t have POTS or OI but I know I have some autonomic dysfunction; perhaps neuropathy.  No official diagnosis either.  I also have severe health anxiety and most my texts to my mother is about how I have something fatal.  I can’t seem to shake it.

I used to be on Citalopram but had since gotten off all SSRIs and benzos, instead opting for medicinal marijuana.   Since I’ve been ill or whatever, I can’t tolerate the latter.  

I leave my apartment but I sometimes just sleep more than I should because I’m so depressed and just think death is around the corner.  

I might ask my doctor to put me back on and see if there’s a difference.

On 7/7/2018 at 6:19 AM, RecipeForDisaster said:

Mine is high from supplementing... the test doesn't differentiate between a cyanocobalamin tablet you took and your real B12 levels. Of course it could be a lot of things, but if you take B12 or lots of enriched food, it could just be that.

 

The ranges are a little wonky too... are you over 2000?

926.  No supplements.  

On 7/8/2018 at 3:16 AM, Scout said:

I hope things work out soon for you, @zerohours000. 

Of course, I'm not a Doctor, but I'd ask them about perhaps lowering meat intake in the meantime? Meat is high in B12, so if you eat a lot of it, it might be adding more to a system that has plenty. Again - I'm not sure why your b12 is high, but that's just a suggestion to look into. 

I know someone who had to cut back on meat after they found out their iron levels were too high. 

All the best.

Just an update: my value was 926.

Normal range is <900.  So it’s only slightly high, but needs to run a “CBC with differential” and go from there.  

10 hours ago, RecipeForDisaster said:

Mine is high from supplementing... the test doesn't differentiate between a cyanocobalamin tablet you took and your real B12 levels. Of course it could be a lot of things, but if you take B12 or lots of enriched food, it could just be that.

 

The ranges are a little wonky too... are you over 2000?

I don’t supplement.  Which is why it’s concerning.  I’ve heard it could be high because of malabsorption as well.  I’ll just have to follow through with my doctor.  Rule out other things hopefully.  🤷‍♀️ 

23 minutes ago, KiminOrlando said:

Ok, well, that isn't great, but it might be something easily treatable and caught early. At least they are going to run more tests and are taking you seriously. Keep us posted.

I will.  I just have an awful feeling about it all.  

My doctor said I have elevated B12.  And of course the possibilities of that suck too.  Anyone else have this?  

https://powerthroughpots.wordpress.com/2018/07/06/5-things-i-learned-at-mayo-clinic/

This is an article I found about a young man’s experience with the Mayo Clinic and their unique approach to combating POTS.  For anyone looking for advice on how to fight back — this has some tools I thought made sense.

4 hours ago, Shane said:

@JillCT My own experience is I did a home TTT and had much the same result you are describing (which I think would meet the criteria for POTS). However, I went to Yale and got the TTT and it was negative.  I've been concerned enough about my symptoms that I am heading to Boston (BIDMC) to be retested and have additional ANS testing. Others probably have better advice, but having a real TTT will probably get you more answers.  I wish you luck and health.

I go to BIDMC.  Let me know how it goes?  Like, what tests get done.  I had a TTT there and it was negative.  But it’s all they did sadly.  Nothing else.  

34 minutes ago, StayAtHomeMom said:

I am not sure where you are from but you can get a cheap sugar checker from Walmart here. Just check your sugar in the morning (no eating or drinking for at least 8 hours) and the 2 hours after you eat and right before bed. You could add maybe times when you feel really bad if you like. Monitor for 2 or 3 days. Your blood sugar should be under 100 fasting and around 120 2 hours after you eat. Anything off I would bring your data to your doc.

If you have a copy of your medical records you can also check and see if it was checked. Depending on when they did the blood draw your number may vary. 

Maybe.  I’m frankly just tired of tests.  I have a follow up on the 13th.  Maybe I’ll try once before then 

Zer0 

18 minutes ago, StayAtHomeMom said:

Have you been checked for diabetes? My buddy was averaging over 400 for high blood sugar for months and didn't know it. He was thirsty, peeing slot, dizzy/lightheaded, and irritable (out of character for him) and he was severely tired. Used a sugar checker my mom had (she is diabetic as well) and it was over 300. So I made him go to the doc and his A1C was 15.9. After he got his sugar under control he felt loads better. He said it kinda crept in on him and he didn't realize how bad he felt til it had come down.

I have a different buddy who has low blood sugar issues and when his is too low he sounds similar to what I have. Dizzy/lightheaded, tired and just generally crappy, can barely move. His last ER trip he got yelled at constantly because he drove himself to the ER because of how he felt and it turns out his sugar was 40. 

My point is sometimes blood sugar issues can be overlooked. They are supposed to test your blood sugar when you have a variety of blood tests done but sometimes some people miss it. 

I’m not sure actually.  I’m not a sugar guy, don’t eat candy, and don’t even eat gluten.  Before this I had lost 90 pounds (have gained 30 of it back since onset).  But I’ll look into it.  I’ve just sort of resigned myself to autonomic dysfunction + coexisting condition...or worse.  

2 hours ago, StayAtHomeMom said:

Do you get up a lot at night to pee? What about being thirsty?

I would say I'm thirsty a lot.  I was peeing a lot at night early but I was also drinking 200 ml of water per day.  So I don't know anymore.  I just feel like a guinea pig at this point.  

2 hours ago, Bluebonnet08 said:

If I were you, I would get tested at an autonomic center.  They are the only ones that can diagnose you, from my understanding.  Maybe a cardiologist could, but autonomic centers are very skilled at understanding these disorders and running the proper tests.  I don't know how a primary care physician could say something either way if they hadn't run the proper tests at an autonomic center?  

What medications are you on?  Could any of them be contributing to some of the side-effects?

From my understanding Sjorgen's can sometimes be missed in standard tests.  The only 100% way to test it is through a lip biopsy from what I've read (I could be wrong here)... I would try to be really thorough with that due to the dry eyes/dry mouth.  Once again, an autonomic center may be able to help you more with that.  I had a really good experience at Sentara in Norfolk, VA.. they have a really good center there and I am going to Vanderbilt in October to do more testing.

Have you done a full iron panel?

I used to use "Deep Sleep", an herbal supplement to help with sleep.  You can get it on amazon.  It was the only thing that ever helped me with my sleep problems.  

As for the irritability, that could be a blood sugar issue... maybe cutting back on carbs/sugar... keeping your blood sugar stable with protein and fat can be helpful with dysautonomia.  Irritability issues could also be hormonal... could you get a hormone panel?  They could also be the result of a medication side-effect.

I would wait to get more testing to try to figure out what is going on.  At this point there are many things it could be.  I know how easy it is to get scared, but you have to take it a step at a time.  I'm sorry you are going through this.  I know how scary it is.  A few years ago, when trying to figure out the root cause of my POTs, I was given a mistaken diagnosis by a doctor... the diagnosis was for a horrible degenerative condition.  I spent almost a year thinking I was going to have this horrible condition, only to see a specialist and find out that I did not have it at all!!  I guess my point is to take it day by day.  Just go only on the testing and results you have and keep fighting to get a logical answer from a specialist.  Hang in there.  

 

I'm on mirtazipine; Depakote; gabapentin; rozarem; vit d3.

I've not had a full iron panel.  

Yeah.  The scary part is really the not knowing.  The scary constellation of symptoms on a day-to-day basis.  I'm just not holding out for anything hopeful.  That it's not been an easy fix tells me something is very off.  And it ******* blows.  

@britton Hey,  I hope you're getting some sleep.  Mine is still wonky but they gave me gabapentin and that at least makes me drowsy --- something I wasn't even close to getting to until 6am in the morning, after a long crappy night.  It makes me tired to the point where I don't want to wake up, and I can't fully say it's "restorative" sleep, but it's something.  I think some behavioral adjustments will have to do as well (INCLUDING to stop expecting great sleep every night, as I did in my pre-illness).  We have to lower the expectations a bit.  That in itself might help (don't know the %s just know it DOES help in the long-run).  Best of luck.

Zer0

3 hours ago, Mama Sarah said:

I have an almost permanent dry mouth and feel the need to drink constantly.

I can't decide if it's a side effect of hyoscine (it's listed on the patient information leaflet but the dry mouth started months after I started on the hyoscine) or whether it's a dysautonomia symptom.  I know dry eyes are not uncommon (I can't wear contact lenses without lots of eyedrops) but not so much said about dry mouth.

I find the medical stuff difficult to get my head around so I've no idea if saliva is controlled by the ANS or not.  I would guess it is because a doctor told me that the ANS controls all the things you can't consciously control.

Yes.  It’s common.  Medication can of course do this, but I get dry eyes and dry mouth.  Sometimes it’s from sleeping with my eyes open.  If it ever begins hurting you might look into Sjogren’s.  It’s an autoimmune disease.  

4 hours ago, Mama Sarah said:

I'm new to the forum and stumbled across it when Googling for advice.

I have:

• POTS, with tachycardia and low BP that can occur randomly, even when I'm lying down.
• Neurogenic bladder and currently have a supra-pubic catheter although I'm seeing a surgeon next week about potentially getting a Mitrofanoff Conduit.
• That incredible ability to faint even with normal blood pressure and this occurs most commonly after exertion.  I live on the 3rd floor and frequently faint after climbing the stairs to get home.
• Chronic insomnia and am always so exhausted.
• Chronic pain.
• Delayed gastric emptying, which leads to big problems with constipation such that I'm on permanent laxatives.

From reading posts here, it seems that all of this is part of dysautonomia.  However, I've not got a specialist taking care of anything.  I see a urologist for the bladder issues, a pain specialist, and my general doctor hands out the Florinef to keep my blood pressure up.  I was supposed to see a POTS specialist but turned down the referral because I couldn't face traveling to the center, which is several hours' drive away.  Thinking now that I made the wrong decision there.

I'd just love to hear that I'm very definitely not alone.  I have no family, live on my own, and am just feeling so lost with all of this.  Been crying tonight because I don't know how to manage it all.  I need to know that there is 'life' in amongst all of this and at the minute I just feel like I'm being betrayed by my own body.  I used to climb mountains and now I have days when I can't even climb out of bed. 

Definitely not alone.  I don’t have the full array of symptoms.  But enough of them.  What you’re saying speaks to everyone, no matter the array or spectrum.  I might very well indeed develop POTS...though I don’t currently have it.  There is life amongst all this.  I’m maybe a poor example because Ive dealt with it all without much grace.  

Others might tell you this but you need to find ways to fight back, even if just a little.  Show your body who it really belongs to.  If it’s getting up to make coffee...then except that task as your new mountain.  I wasn’t bedridden but I’ve lost my primary job (used to work two and commute 4 hours a day).  I was impaired cognitively and emotionally and somewhat physicallly.  

I can’t give you much advice for managing symptoms but there is a wealth of experience and knowledge on this site.  You’re gonna learn a lot because many have gone through exactly your state of mind and your predicament.  It’s unfair, it’s dehumanizing, and it humbles everyone.  I feel sick to my core that I was “fine” 4 months ago and now I’m stuck in a place where every day is not a gift; it feels more like a sentence someone handed down for a crime a I didn’t know I committed.  I’ve been retracing my steps for my lost life like a post pair of keys. But sometimes the keys are in your hand in the very end.  It doesn’t feel that way right because everyone at some point here has felt utterly robbed of something: our certainty (peace of mind); out comfort; and those awesome moments where one can’t wait for the future or even looking forward to something. I used to look forward to so much and now I’ve really tempered my expectations of normalcy.  I still have goals but they’re no longer independent of limitations.  They’re welded to them now.  

I hope you improve and continue to improve (that is the acceptance I myself continue to work: modifying my goals as MY goals and no other standard).  

You can do it.

Best,

Zer0

2 hours ago, StayAtHomeMom said:

I just wanted to add my 2 cents. 

I think it was wonderful that you were able to do that. You got very lucky. I think sometimes we get into a "I can't" mentality and stop pushing. Pushing it can definitely cause our bodies to push back. But I am personally too stubborn not to push. 

Today I spend 2 hours in the awful heat at 2PM to spend with my family at a local 4th of July parade. I definitely felt the heat and I am sure I will regret it tomorrow but I just can't roll over with this disease. I took my meds and I am laying down for another hour or so before I take my kids to go see the fireworks this evening. 

Salt up am keep your fingers crossed that you are not bedridden for the next week. 

No.  It’s sound advice.  I also hope I’m not bedridden.  I work at a bording school so I’m just playing Mah Jong tonight...for 3 hours.

1 hour ago, WinterSown said:

 

Thanks for the long and thorough response.  Yeah — I don’t think I have the POTS or OI kind of Dysautonomia but it still looks that way.  I agree about the pushing myself to unhealthy limits.  I probably chose the wrong day abx wrong season to try and do this.  I mean, I saw the other folks struggling with the heat.  So a poor choice on my part.  I just didn’t want to be in my room all day or avoiding people like I usually do.  

What do you suggest for less taxing exercises?  I basically want to keep my body functional.  I am symptomy a lot.  So I’m just sort of accepting that those aren’t just going to disappear, poof.   I’m pretty sure I do have “something.”   It may very well just be a mild dysfunction.  I don’t know.  I still fear the worst. It’s that void of the uncertaint that crushes me mostly—is it this, is it that, how long do I have on this stupid rock???

Thanks again for your thorough response.  You guys have helped me out a lot.

Best,

Zer0

@PistolThey're cannabinoids from marijuana plants (cannabis).  One is psychotropic --- the THC --- and other is CBD --- which doesn't have the euphoric feeling but instead has more directly medicinal properties.  https://www.marijuanabreak.com/cbd-vs-thc

On 7/3/2018 at 12:20 PM, WinterSown said:

Have you tried taking an allergy pill? Your sinuses may be swollen from summer allergies and placing pressure on your innder ear.

 

Not yet.  But I’ll look into that.  Good to know.

1 hour ago, GasconAlex said:

Tinnitus is annoying, I used to get it from time to time like most people. However for the last 2 years it has been constant on the left side. Wierdly this is after I had the entire left ear removed (they left the outside ear but cut out all the middle ear, sealed the ear canal,  and removed virtually all the cochlea ). I had to have the nerve conduction study that shows there is nothing there but .... still the tinnitus. I mentioned it to the surgeon at the 6 week check {will go away in a couple of weeks}, the 4 month check {should only last a few weeks more, not longer than 6 months after the op}, and the year check up. Finally said 'it happens’ nothing more can do, and 'live with it' the nerve is damaged closer to the brain if it doesn't heal itself cannot risk cutting the nerve again.

As the nerve was healing I often sort of heard music (like a neighbor with the sound turned up) I kept getting disturbed by this but I am sure it's like 'phantom limb' and is getting much less as the months to by.

I'm fairly sure that for me the tinnitus is not related to the pots! I am trying to convince the local pain doctor to find out about using TENS for tinnitus, but due to my circumstances he wants expert opinion before he gives it a go. According to the TENS machine it can work with some forms of tinnitus - if anyone has tried it I'd like to know how it went.

That is some bizarre stuff.  That does make a lot of sense though—phantom sounds.  Hopefully you get some relief.  

1 hour ago, TCP said:

CBD relaxes the nerves and helps with anxiety. If you can get the sort with THC in it it's even better. In the UK you can only legally get 0.2% THC. I use a vaping pen, as CBD oil upsets my gut, and use a variety of CBD e-liquids. I am hoping to cut down on the Gabapentin and I hope in time the CBD can replace it.

I used to use LDN in cream form. 

@TCP I tried it 1:1 last month and it sent me to the ER with violent shaking.  I think I need the CBD-only.  What’s odd is this: I used to recreationally and medicinally use marijuana. I had depression and anxiety and hated SSRIs and benzodiazepines (still hate benzodiazepines).  But once all this came about, I couldn’t tolerate mj, caffeine, or alcohol.  I’ve been sober as a priest for 4 months and I really miss rolling a joint after a long day at work.  But it’s legal in Massachusetts.  But I’m weary still because CBD is still so unregulated that there’s a lot of false product out there, along with a lot of suffering people.  That can lead to a lot of exploitationof that suffering because we get desperate for a cure-all (or a cure-some, at least).  Which is our right obviously.  

My sister has her card so maybe I’ll experiment again with it.  I made a horrible mistake when I got the 1:1 THC/CBD.  But I think I can tolerate CBD a little better.  We’ll see.  I think it’s one of this case by case things.