WinterSown

I have NCS, I get Drop Attacks throughout the day. What previous preps have you used? This is something you can fix or lessen in severity.  For my first colonoscopy, a few years ago, I was given miralax to drink with a gallon of water (or some very similar thing) and it made me sick as a dog. I felt horrible inside my head, I was shaking and I threw up a lot of it. Last year I had another colonoscopy and the doctor switched me to Prepopic which is a different type of laxative and is much less fluid to drink. I held it down fine and didn't feel ill at all. Ask if you can have a choice for preps and tell the doctor your previous reactions--they will give you a script for a different prep if they think that is right for you. It is very important to take care of yourself, colonoscopy is not a fun experience, not at all, but it is a necessary evil. I hope it goes well for you. 

4 hours ago, Pistol said:

@WinterSown - is Dr Howzyerbutt really a butt-doctor? That is hilarious! 

Yes he is, butt that's not his real name.  LOL

39 minutes ago, MomtoGiuliana said:

So sorry!  It is good to know what is wrong/have a diagnosis.  I'm sorry you may have to have surgery.

Thank you. I hope to see the him on Thursday, probably will. In the meantime I see my DPT tomorrow and my EP on Wednesday--both already scheduled. I have to tell the two other doctors before I see Dr Howzyerbutt again. It's just so arrrrrggghh. 

Start slow. Don't do thirty reps, do three reps. And slowly, slowly work your way up to more. I do a lot of exercises on my bed and I have some balance platforms to help with core and balance. And I walk. All of this is at my own pace. When I don't feel I can do more I do not do more---this was hard to learn but it was part of winning. I won't be defeated admitting I must do less for today or a few days. When I am ready I step up the pace and reps as I can. I have had help with a physical therapy doctor who has created a program specific for what I need with consideration of my limitations. As my medical doctors adjust my care he adjusts to match them so I am never doing beyond my capacities.  Most important I've found is to be kind to yourself and be forgiving to yourself. Remember that you can do everything 110% right but things still go wrong. Go slow, go safely, and only do what feels right--listen to your head as well as your body. Pull back when you need and advance when you are ready. Feel better soon.

8 hours ago, Pistol said:

So sorry @WinterSown! I think that this condition would be treated by surgery - no? 

From what I've read so far yes, sigh. I've already had a sphincterotomy; getting a fissure four years ago (this very day!) was the first sign that something was horribly wrong with my body. The doctor is good surgeon who did not originally know anything about d'mia but he's been learning-- he said 'Trudi, you gotta lotta wrong with you.'  Despite the truth of it, it's nice to have someone care for me who understands the complexities of what d'mia does to your body.

1 hour ago, mehganb81 said:

I love your doctors name, keeps me sharp

He always says Hi! How's your butt? He does keep his nails quite trimmed (yay!).

Thank you.

This is one doctor who is not part of the hospital group that does my D symptoms, but he has taken care of me for a few years. He's down the block from my cardiologists. I feel very yin and yang today. When I read the DX I was more happy that the confirmation was a confirmation of me being accurate in my descriptions. We all know that sometimes it's an uphill  battle to be believed. Fistulas are not cool so for now I'll enjoy the exhilaration of a diagnosis. 

Never give up, never surrender!

Dr Howzyerbutt sent me for a pelvic MRI series which I had done yesterday afternoon. The results with pictures were online today, their speed is amazing, and I got a nice gift blanket too. The opinion is Chronic Intersphincteric Serpiginous Perianal Fistula.  I have no idea how this is treated and only a vague idea about how it happened. I don't personally know anyone who has had a fistula. If anyone has been so unlucky could you please share your experience. I will call Monday to schedule a followup with the doctor but I hope to have some knowledge about it before the visit.

 

4 hours ago, Pistol said:

Good for you @WinterSown - the insurance companies mostly look at if any of the test he ordered were duplicate or unnecessary. That way hey can get him for Fraud. I have never went as far as reporting a doc to the state but I would totally do it. The only reason these docs get away with their snobbish and ignorant dismissiveness towards us is because we let them. They work for US and we do not have to put up with them. If we have a contractor working on our house doing a bad job - we fire him and ( in this state ) report him to the licensing board. Tht way they will not do a bad job to the next person. It should be the same with docs. --- If the doctor is part of a group or hospital you can also start an official complaint to the quality assurance department. I have done that before and the doc in question had to go in font of a peer Review ( other docs investigating the incidence ) . /then they decide what action or punishment is appropriate. In my case there was disciplinary action and this ER doctor no longer is allowed to treat me. Good riddance! 

it's very complicated but I think it should go to peer review

Don't go to the ER before calling your doctor or the ER first, they'll tell you to come in or not. 

This is my 24/7/365 friend. At anytime my right leg goes numb, sometimes my whole right side, sometimes my left cheek and hand also go numb at the same time as the right side. I've learned to keep on walking--it does not freak me out anymore though when these symptoms started I was quite concerned. It does wear off in a few minutes so it's not a long lasting sensation, just weird more than anything. It also comes with pins and needles--parasthesia--like opening a can of new seltzer--that stingy effervescence. Drives me nuts for a bit. The numbness and the tingling are very distracting, and that tingling is stinging, but overall it doesn't do any lasting damage. It's just one of our nastier sensations. My neuro has sent me for many head and neck scans. They did find some radiculopathy; I go to PT to help with that. I get a good workout and a great massage from the doctor there. Definitely have your numbness checked out--my neuro was very helpful with that.I wish you well.

I stopped at my  insurance company today and asked their advice on what is the right procedure when you think you have not been properly served or cared for by doctors they have paid. I had some testing done and well, you shouldn't need to have the same test three years in a row! The third test by the local hospital group was much more professional. I want to find out the right way to proceed--is this something the insurance company takes care of or do I go to the state? I'm not sure yet if I am observing genuine offenses which should be reported, being rude is not a reportable offense but not doing your job is, so I must be very certain and I must proceed with a path that repairs rather than damages. I do well know that many doctors do not know dysautonomia when they see it but they know symptoms which can be proven with tests. Ignoring the documented results in front of you is problematic. The doctor, I think, needs to learn some things--respect your patient being first, but really--if there is nothing in their partnership spec book on what to do when you encounter something you've never seen before they might want to add some pointers about what to do because doing nothing does nothing but take the patients money and leave them still in need of care.

The woman I spoke with at the insurance company was so kind and caring,  and I am glad for that, she made it easy to talk about something I believe needs to be looked at by professionals. She took my information and she did some checking and came back with a number for a special division in their company that helps members with advice and guidance. She also told me to also pursue with the state's office of professional medical conduct. 2019 is gonna be a roller coaster. 

13 hours ago, Derek1987 said:

Now it's stopped. Lasted about a week and haven't seen any blood since. Shrugs.

And hopefully you won't again. If you do get it checked out. Do remember to discuss it with your primary to see if you need any changes to your diet so you do not trigger another event which will cause bleeding. 

Magnesium can make you poopy. Which is good if you are constipated but not good if you are normal or already loose. I am glad you found a way to control this just by cutting the magnesium.

Fatigue is a very common symptom--I can vacuum the living room and be wiped out on my bed for two hours afterwards. Fibro is real but is your pain from fibro? It could be from exercising when your body needs you to be doing less physical activity.  I've recently read an article about living with chronic illness and one of the points was to recognize that you need to be kind to yourself.  If doing thirty reps is wiping you out then go back to ten. I usually set the bike resistance to 6.1 or higher but when I'm beat it's less than 5 and I knock off a LOT of minutes. 

So do less for a while. It's not going to create deconditioning. I go to PT twice a week and one of the doctors at the center told me that exercise, like diet, is acruitive. It's not okay to entirely stop but for a while it is okay to do less. Your body is telling you something so listen. You want to exercise which is great--that's better than wanting to quit which would be bad for you. During flares I do a lot less reps and lower the resistance and make an extra effort avoid my triggers--on bad days I lower the lights and do some yoga or 'gentlecises' on my bed. Just a little will still help with my balance and circulation. When I feel ready I slowly build back up. 

You need to see your primary who will recommend proctologist aka colon and rectal surgeon to diagnose this. If you don't need a referral then call a local proc shop and make the appointment for whomever has the next appointment. Rectal bleeding is something that needs to be checked out by a pro.  You've had this a week so make the appointment to get it checked out asap.

I made Poached Pears in the microwave. So easy. Put some chopped fresh or frozen fruit in the bottom of a microwave casserole, nestle in the peeled pears, drizzle with some syrup or sprinkle with some sugar (optional), I added some nutmeg (spice optional), cover and microwave using the frozen vegetable setting.  These can sometimes boil over in a shallow casserole so put a larger plate with some paper towels under the casserole to catch any drips.

 

What do you do that makes it feel better or reduces these events?

7 hours ago, Derek1987 said:

"I get Drop Attacks--fainting and remaining conscious for the reset. Arrrgh. "

What do you mean remaining conscious for the reset? The first and worst time i fainted I was fully aware of where I was.vision loss, hearing loss, and paralyzed .I couldn't even put myself on the stretcher when the paramedics got there but I was coming out of it. When I was put back in the ambulance, the paramedic said my blood pressure is coming back up. On a side note, my wife told me the paramedics were all smiles and not worried and I was thinking I was dying. Worst experience in life.

I don't lose consciousness. I used to collapse but I've been in PT for well over a year now--I've trained for balance, strength, core and gait. It's unlikely I will smash my face or get large  angry bruises on my shins anymore. The worst part is not the collapsing; I think the worst part is feeling your own personal universe explode and come back together again in your own body. Imaginative words for unique sensations that can hardly be described yet my cardiologist agrees. Everyone is their own person and how your nerves and their reactions lay out are as individual as fingerprints. 

Not all dysautonomia are POTS. I frequently have numbers similar to yours. I see an EP and he tweaks my meds about every six weeks. We are trying to raise my baseline numbers so that when they do suddenly drop it is from a higher starting point to reduce fainting. 

Keep a diary of your numbers and sensations to bring to your next visit. 

1 hour ago, MeganMN said:

Sorry for the many postings/questions, but still trying to figure all of this out and how this is going to effect me in the long term! 

So I went to the Cardiologist on Tuesday and he is not totally convinced about the POTS diagnosis, even though I have had two MAJOR episodes now with heart rates in the 150's when up for extended periods.  He seems to think it may be Vasovagal Syncope, which just does not make sense to me, because all of my orthostatic checks were higher Blood Pressure with higher Pulse.  He thinks that because I had a prodrome (clammy, nauseated, heart pounding) before I passed out, that it was more likely to be a vagal response.  Interesting.  He recommended me tapering off the Metoprolol and adding Florinef tomorrow if I am still having symptoms.  So I have been off the Metoprolol for two days now and the really odd thing is that I am still having weird symptoms of dizziness, head fullness, throbbing legs, etc., but now my heart rate is randomly in the low, bradycardia category, with occasional spikes when up (but not every time) and my blood pressure is REALLY low. (100/60 when sitting, and dropping into the 80's systolic when up). I typically have not ever had a BP drop like that when standing, it usually goes up.  I am thinking that I should still add the Florinef because of my low BP.   Have any of you ever had an episodic period of POTS symptoms followed by some weird HR/BP drop, almost like some strange rebound thing?  Just curious, this all seems so bizarre.  I feel like I am trying to figure it all out on my own because the doctors are just throwing random things out there without really knowing what is going on. 

POTS isn't the only dysautonomia, there are many of them. My EP , with a wink in his eye and big smile, calls it my NeuroCardioVasuVagally thing. Once in a while my numbers do POTS-like jumps, but generally not. I I get Drop Attacks--fainting and remaining conscious for the reset. Arrrgh. 

Over the next few weeks and months your doctors are going to tweak your diagnosis along with your drugs to find the best management that works for you. We are all so very unique that there really is no one-size-fits-all drug or treatment. We don't use drugs to raise my BP, instead he ever-so-slowly took away drugs that were lowering it too much. I saw him a  few weeks back and it's the first time in over a year he didn't tweak my drugs--not many left because I do exercise and eat right which is a huge part of management. I certainly understand your frustration but it can be a bit of a bumpy road for a while until you get your meds and management worked out. During this time be kind to yourself and acknowledge that it's trial and error and you are on the way to being the best you can be. 

I have a script for low-dose 2mg valium. When I can't stop the sensations I start with half a pill which usually works well at toning everything down. If I take the full pill it's nap time. But that's sometimes good too. Feel better soon. 

 I will PM you.

Would you be willing to come out to Long Island?

On 12/7/2018 at 6:47 PM, DAB19 said:

I recently decided to buy a heart monitor for home use, I mostly got it to help bring peice of mind when I’m having strange heart symptoms, I never actually expected it to show anything... well... it did and I went to the ER. They did their normal cardiac stuff, said everything was fine, then released  me.  I, then decided to call my cardiologist (not a dysautonomia specialist) to see what my next steps should be... He returned my call at 9 PM and started to basically belittle me, over the phone and at night no less. I’m so discouraged, I feel like I’m between a rock and a hard place.

Do yourself a big favor and never go to an ER without calling them or your doctor first. Describe your symptoms and let them tell you to  go to the ER. Having wonky numbers doesn't mean you are emergent and your cardiologist bit your head off for it--you were probably his last call from his home before he dragged his bones to bed.  

I told my doctor of the new developments and he wouldn’t listen. Fast forward to today I was driving when I had a weird muscle spasm feeling in my chest, this was accompanied by lightningheadedness and shortness of breath, needless to say I’m in the ED again! !!

Put the phone down and have a friend hold it. Patients using hand-helds in the ED aren't considered as ill as the ones who are barely breathing. Basically, if you are so ill that you need to be in the ER you shouldn't have the energy to even be distracted by text, calls, or games. If you are emergent act like it otherwise wait to be taken care of behind anyone who is slightly more ill or traumatic. 

 I definitely plan on seeing another cardiologist, luckily I found a dysautonomia doctor during my research today that was close to me. But as luck would have it his office was closed today. I’m so upset I don’t really know what to do. Has anyone else ever felt like your heart was spasming? I’m also wondering if it could have been something esophageal mimicking a heart issue? Just looking for some consolation, trying to come up with theories. I should note that what I felt today didn’t feel like a PVC or PAC, it was different then what I’ve felt before. Just looking for some peace of mind, thanks for the replies. I included a picture of the home heart monitor reading. I showed the ER doc and they didnt give me a clear answer.

Talk to a gastro if the cardiologist says your numbers are fine. Which, btw, is actually a good thing. It's what most of us want to hear.

 

 

1 hour ago, Help4Me said:

but they know I am poor and sickly so they count on me being an easy victim for them to harass and belittle and abuse.......

If you let them they will keep doing it to you. Attitude counts for a lot. I will rapidly and assertively, verbally bite the head off of any doctor who tells me I don't have dysautonomia. I've done it and it's a most satisfying` experience. I went today to a doctor I haven't seen in many months and all the current diagnosis with the diagnosing doctor's name for referral went into their files. There was not a single question about any of it. Dysautonomia and wonky symptoms accepted. It was a good visit.