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Dr.Diana—they thought my daughter had something called superior canal dehissence.(In addition to her POTS and EDS diagnosis). She’s been having severe pains in her ears and head for about 3 months now. She had ever symptoms of SCD and today we were expecting to hear she would have to undergo brain surgery when instead the dcotor said the CT scan was negative. Most people would be jumping for joy but we were so dissappointed. We thought we finally had an almost ending to one of the chapters in this very long drawn out storied on my daughter’s life. I said to the ENT well if it isn’t SCD then what is it? And she said we don’t know. It could be migraines. It could be her brain is prosessing things incorrectly and we want her to do cognitive behavorial therapy. This seems to be the catch all for everything when they don’t know what else to do.
My daughter has been unable to eat for months now. She’s been losing on average of 4 pounds a week. Things get “stuck” in her throat. SHe feels like she’s having a heart attack. The doctors remark—“I need to put all my overweight patients on this diet”. He made a joke of it and I told him, you may think it’s funny but I don’t.
She HAD long THICK brown hair,you notice I said HAD—it is no longer thick. She’s lost an enormous amount of hair and when I said something to her doctor he said put her on biotin it’s worked for my other patients’. It’s always a band-aid and never getting to the root. Blood work like TSH,t4 and simple things are negative but something is not right. She is fatgiued,weak,forgetful,cranky,having pain and she cannot eat without choking/vomiting. I’m notn sure what else to do or where else to turn.
Oh, Mommieandme, I’m so, so sorry you are going through this. Unbelievably, this is not uncommon. One friend/patient told me (after she lost 80 pounds because she was unable to eat), that her doctor told her it may have been the best thing that ever happened to her. WHAT?! She responded with something like, “Dr., this isn’t about me looking cute in my jeans. I
AM VERY SICK.” 🙁 I’m embarrassed for your doctor, really. First, can you tell me what meds your daughter is taking? Are you following any of The Driscoll Theory protocol? When I was too sick to keep ANYTHING down, clear liquid Benadryl calmed my system enough for me to eat. Did you try Zantac/Zyrtec? Can you ask your doctor to check ALL of her B-vitamin levels and correct as needed (with INJECTIONS)? Have you tried (forgive me if you’ve already told me) Diamox if she has symptoms of hydrocephalus or an empty or partially empty sella on her MRI (I wouldn’t take their word on the scan being “normal” or not. But DO ask about the sella, OK?) Let me know? Oh, and you can google “low histamine foods” — it sounds a little bit like she is reacting poorly to histamine (hence the mast cell medications). OH! Has she tried Cromolyn Sodium?! It takes a few weeks, but BOY, did it calm things down for me!!! When we ran out and it took forever to get a refill, I realized how much it was doing for me. Unbelievable. Does your daughter have constipation/IBS? If so, depending upon her age, perhaps she could get in the upcoming IBS treatment trial? (more on that soon) That would get her started down the right road, I think. ALL DISCLAIMERS IN PLACE, OK? I cannot diagnose or treat you, certainly not over the internet. I am sharing what I have learned, as a patient, on my journey, and that of my kids. Cool? Big hug, DianaHi Dr.Diana:
My daughter takes a mess of drugs. She takes (are you ready???)
Florineff
Midodrine
Pindolol
Zrytec
Necon
Metformin
Prilosec
Klor-Con
Flexeril
Tramadol
Wellbrutrin
Alprazalam
Viatamin D OTC
B-12 OTC
MylantaShe was diagnosed with POTS in 2007 and EDS in 2011. She also has Acanthosis nigricans that’s why she takes the Metformin. For about a year now she’s been having swallowing issues and it may have even been longer than this but we were always blaming her chest pains on the EDS when now we see they are really from her swallowing issues.Last year she was tested for mast cell but it was at the high end of normal the doctor said. We had her on large doses of benedryl and zrytec but she had strange reactions to the drugs. She was having reactions like “wanting to run scissors across her hand” or go run in front of a car”. She said Mom I am a rational person and I know this is wrong as soon as we stopped this medicine within a day it subsided. I think she just had too much in her system but he cut it out completely. I did see changes in her symptoms though. These eating issues have been subtle. One day they seemed to have just been there and she couldn’t eat. We weren’t really paying much attention to them. Now she can’t eat at all and everything is getting stuck in her throat. She can’t drink anything cold,eat solids,spicy or she WILL go into a severe chest spasm. I will get that clear benedryl tomorrow and try it for her. I am willing to try anything that will bring her comfort. I am not complaining about her losing weight cause she did need to lose weight but she’s losing important nutrients,vitamins and she’s lost so much hair that it isn’t even funny. She’s not the same teenager she was 6 months ago. Today I had to take her for IV infusion because she was so weak she couldn’t even stand up.
She’s went to the ENT on Tuesday and they thought she had superior canal dehisence but that was ruled out but the pain is still there. The doctor sent her for an MRI yesterday but I won’t have the results yet for a few more days at least. I will definitely ask about the sella. My daughter is NOT on Diamox and I will try asking about it but her doctor isn’t one that likes to put what I ask for so I think the chances are going to be slim,but I’m sure going to try. I appreciate your assistance. I have to tell you that I had words about you with our doctor. He informed me that you were “just an opthamologist” and I said “Yes but she is an opthamologist who has POTS and EDS and a family who also has it so she has a vested interests in this disease!” Sorry,Dr.Diana but sometimes these doctors think they are too big for there britches with their diplomas and think they are above everyone else…and I am finding they are far from it! Thanks for breaking that barrier and being human.
Dr.Diana—we got the results of the MRI and it says normal. One thing however that keeps standing out to me is one line—-“somewhat low-lying cerebellar tonsils is a normal variation” Could this low lying be an issue with all of my daughter’s headaches,vomiting and restless legs etc…
Hi, MANY of us have “low-lying cerebellar tonsils” (otherwise referred to as Cerebellar Ectopia, or Chiari 0) and on that basis I’d say, if they look at it more closely, it’s NOT NORMAL!
I wonder if all those “healthy controls” who have this “normal” low-lying cerebellar tonsils “varient” are just in the early stages of this condition and relatively asymptomatic (i.e. no symptoms that a normal healthy person wouldn’t shrug off, as unimportant).
Many sufferers have been able to live a “normal” life relatively asymptomatic for some part, then something comes along that tips us over the edge and the symptoms are no longer of a tolerable level.
Whiplash sufferers for instance. I just think it’s odd that the percentage of whiplash sufferers who progress to a more serious condition, is similar to the percentage of the whole population who suffer from EDS in general. I just think the EDS condition makes us more susceptable to injury, be it from a head/neck trauma, or from a virus, either of which would trigger cytokines and the like, to proliferate.
I myself was 48 years old when I started to become troubled by the condition, following a bad backwards fall that inflicted a head and neck trauma – before that I’d been akin to superwoman, loads of drive, energy, stamina, enthusiasm and brainpower.
Just as a point of interest, my swallowing problems were worsened when my brainstem was being stretched due to my head going too far into flexion, due to cranio cervical instability. Is your daughter’s level of flexibility bad enough to be contributing to instability at the cranio-cervical junction ? (don’t rely on the medical fraternity to spot it, there are many ‘methods’ of testing for this and out of the dozen or so that I tried, only one or two methods showed it up!)
If she does have it, or if you think she might, I would suggest she try a firm Philadelphia Collar for a while, it’s the best one I’ve found that holds the head in a better relationship to the neck, so that tension isn’t as easy to apply to the brainstem. It made quite a difference to several symptoms for me.
I have to avoid hot spicy foods too because this causes a swelling of the throat for me (instantly!) Another thing which caused throat swelling for me was looking from side to side whilst my head was in flexion, for example looking down whilst flicking through a magasine.
Regards
Barbara
(UK)@Barbara–thank you for your reply. Although her MRI says normal those words just keep haunting me. I have not heard from her doctor yet but when I do I plan to bring this up and I’m trying to arm myself with evidence so I can show them that there are people that have issues with low-lying and chiari 0. I do believe something is terribly wrong. It’s been 7 days of headaches and its located in the back of her head near the base of her base of her skull. She has all the other problems too that I mentioned. I just wish the doctors would listen to me. I’m so frustrated with the entire medical profession right now. Does my daughter have to be dead either by suicide due to the pain or by her health before they listen???
Dr.Diana—we got the results of the MRI and it says normal. One thing however that keeps standing out to me is one line—-“somewhat low-lying cerebellar tonsils is a normal variation” Could this low lying be an issue with all of my daughter’s headaches,vomiting and restless legs etc…
HI Mommieandme, It is not clear to me if your daughter had the strange reaction to Benadryl or Zyrtec or BOTH. Did you try them one at a time? Does she have hyperadrenergic POTS (are her norepi levels very high when vertical?). High norepi and mast cell degranulation have both given me the feeling of needing to jump out of the window. Seriously. I told my husband that I felt like I was being eaten alive from the inside out. I couldn’t escape my body. You’ll want to discuss these things carefully with her doctor, of course. If she is reacting to everything, would you and your doctors consider a month or two of Cromolyn Sodium or Ketotifen just to calm down her system so she can handle the meds? With hyperadrenergic POTS, some of us need a benzo like Xanax in order to stop the feeling of needing to escape our bodies. It worked like a charm for me, I stopped it cold turkey once my other medications were working (which is unheard of!) and only recently needed to add it back in after an injury. Has she tried Diamox? It can make those “low hanging tonsils” an issue if she has some mild hydrocephalus — very common with us. My son and I avoided surgery by taking that 8 cent pill!!! Now, we took it for two YEARS before we were “draining” again, but I assumed we’d need it for a lifetime, so that was good news. Any symptoms of hydrocephalus, I’d discuss Diamox with your doctors (lots of videos on this on the website). Diamox also stopped my constant nausea. Ugh. Will you check on those things? All low risk, fairly easy… Cool? Let us know? 🙂 Diana
Hi, MANY of us have “low-lying cerebellar tonsils” (otherwise referred to as Cerebellar Ectopia, or Chiari 0) and on that basis I’d say, if they look at it more closely, it’s NOT NORMAL!
I wonder if all those “healthy controls” who have this “normal” low-lying cerebellar tonsils “varient” are just in the early stages of this condition and relatively asymptomatic (i.e. no symptoms that a normal healthy person wouldn’t shrug off, as unimportant).
Barbara
(UK)GREAT point, Barb!!! I found one reliable way of looking for external communicating hydrocephalus that may be contributing to the lower tonsils is to see if she has an empty, or partially empty sella. That is a sign of hydrocephalus, but is “normal in 6% of people”. But as I told my neurologist, my MRI with an empty sella was called ‘normal’. I responded to Diamox (and I had to develop a CSF leak through my nose just to make my point. ha.) I think the term “normal” should not be used if the patient has low lying tonsils and/or an empty or partially empty sella IN ADDITION TO symptoms of hydrocephalus or chiari. I think those are important clues that are getting missed. GREAT POINT! 🙂
The doctor says she has orthostatic intolerance while the cardiologist says it’s hyperad. pots. So,it’s been a mixed diagnosis. Then the EDS diagnosis came 3 years after. When she was tested for mast cell she was not tested lying down. They did the blood work just like they did any other blood work. She does take xanax and she began this almost by accident. He gave it to her for a dental appointment and I found out it helped her to relax and “feel better” so I asked if she could take it everyday. So now she takes it all of the time.
We see him tomorrow and I’m going to ask him about the Diamox but I can’t make him prescribe it. I just know “something “needs to be done because she is miserable.
@Barbara–thank you for your reply. Although her MRI says normal those words just keep haunting me. I have not heard from her doctor yet but when I do I plan to bring this up and I’m trying to arm myself with evidence so I can show them that there are people that have issues with low-lying and chiari 0. I do believe something is terribly wrong. It’s been 7 days of headaches and its located in the back of her head near the base of her base of her skull. She has all the other problems too that I mentioned. I just wish the doctors would listen to me. I’m so frustrated with the entire medical profession right now. Does my daughter have to be dead either by suicide due to the pain or by her health before they listen???
I’d just like to say that my severe headache was at the back of my head. I’d had to endure it every day (plus neckache that went down to my shoulder) FOR 5 YEARS!! Then I was issued with a Philadelphia Collar and Body Brace and the pain MARKEDLY reduced overnight (from a 9/10 to a 3/10 – yey!!). I still wear the Philadelphia collar (no-longer need the body brace) and I’ve never been troubled with that head/neck/shoulder pain since.
What this device did, was to hold my head in good relationship to the top of my neck therefore allowing the otherwise intermittently restricted flow, of cerebro-spinal fluid (CSF), to flow more freely, reducing the level of pressure in my head, which made a HUGE difference (improvement) to several of my symptoms.
Regards
Barbara
(UK)The doctor says she has orthostatic intolerance while the cardiologist says it’s hyperad. pots. So,it’s been a mixed diagnosis. Then the EDS diagnosis came 3 years after. When she was tested for mast cell she was not tested lying down. They did the blood work just like they did any other blood work. She does take xanax and she began this almost by accident. He gave it to her for a dental appointment and I found out it helped her to relax and “feel better” so I asked if she could take it everyday. So now she takes it all of the time.
We see him tomorrow and I’m going to ask him about the Diamox but I can’t make him prescribe it. I just know “something “needs to be done because she is miserable.
Orthostatic intolerance is simply a description, it means that something is stopping your daughter from standing up for any length of time, it could be caused by several things.
The cardiologist says it’s Hyperadrenergic POTS, so this is the diagnosis that sums up the medical signs and describes what exactly is happening in your daughters case, so it’s not contradictory, it’s just further defining the orthostatic intolerance, so to speak.
EDS is a somehow related condition, probably making us more susceptible to suffering these (and several other) conditions. So, if you like, your daughters malaise (like many of ours) will probably turn out to be a combination of several different diagnoses (all correct), many of which crop up time and time again, amongst those who suffer from this disorder. That’s why Dr Diana’s Theory makes such sense to me.
The good news is that things are now moving out there in the medical world, after many years of stagnation, that will hopefully change our lives for the better.
Regards
Barbara
(UK)
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