TCP

You're welcome. I also take B12 sublingually as I am vegan, plus a pro-biotic, quercetin (without bromelaine), vits and minerals to aid over all health and absorption. 
 

I hope you feel much better very soon. I have attached the shopping list that I follow. 

YASMINASHOPPINGLIST.pdf

I don't think that I have Chiari, but I do have degeneration lumbar and cervical, plus a twisted spine and tilted pelvis. I have a pronounced hump at the top of my spine and my head is thrust forwards. 

Thanks for your replies. I hope you are doing as well as possible. 

I have neuropathic pain all over my body and head. I am guessing it's SFN as I know that there is a connection with EDS and POTS. It came on when the POTS symptoms came on nine years ago. 

Hello. I think I have SFN along with EDS and POTS (plus possible MCAS/MCAD). I am on Gabapentin and Nortriptyline since 2007. I have noticed the neuropathic pain eases when I lie down, whereas most people I know with neuropathic pain says their's gets worse at night. No one is symptom-free of this nerve pain like me when I lie down. I have the pain all over my body, even my head. It is intense and burning, prickling and also deeper nerve pain and shocks/stabbing sensations. 

Anyone else pain-free at night? 

I have tried many diets in the past 30 years and after eating cleanly, I happened upon the possibility that I had MCAD/MCAS, as I have reactions to many foods and awful IBS and gastroparesis. I looked into various low histamine diets and also had a list of foods that I knew upset me, like strawberries, raw carrot, red tomatoes, mushrooms and some nuts etc. I noted that many diets varied after checking out 9 lists suggested online. I wasn't feeling that great some weeks into the diet and then I happened upon Yasmina Ykelenstam's website and I was interested in her approach where she ate low histamine foods, but all looked at low inflammatory foods and did not snub them even if they were a little higher in histamine. I now follow this diet and I have tweaked it over time, but I feel it is helping me. I do get issues with carbs so cut down on anything that can bloat and cause sudden drops in blood sugar. I have weaned myself off fruits, for the time being. It is hopeful that as time goes by I can introduce more of the foods that I had a problem with. I know it takes about a year to really feel much better and I am a month or two off that. I am currently eating a high veg diet (I am vegan and had issues with dairy anyway) and eat no processed foods including sugar, low carbs and gluten-free. I am talking mainly veggies, nuts, seeds, rice and supplement. I keep a note of any reactions. I note pea shoots help and nigella sativa seeds, too, with digestion, so add them to many foods. I also use loads of herbs in every meal. I am also into veg protein in veg juices. 

I'm not sure what to suggest, although I have had issues with gastroparesis in the past and not longer have it since going low carb and gluten-free. Some med withdrawals have been awful and they have really upset everything. Very gradual withdrawal over weeks, if not months, can help me. 

I hope you feel better soon. 

 

Are you following just a low histamine diet or a low inflammatory one, too? Almonds, pistachio and pecan can be eaten and also avocados on the diet I follow (Yasmina Ykelenstam's). The med withdrawal could be effecting you. 

Signed and shared. 

Yes, I have vivid dream, but not nightmares, but my body reacts very strongly to them. 

Yes, I have very weak heavy legs. They feel much worse when I am having a bad day. 

I have sudden wakefulness with panic, feeling of doom, heart racing, dizziness, nausea and sweating. It happens several times and week and worse if I am anxious about something. I am often dreaming when it happens, too. 

I've had these episodes mainly when POTS really got bad. I haven't had any for ages. There is a link with POTS and also with Chiari Malformation. 

Hello and welcome to the forum. I know it must be hard for your daughter and also yourself to see what she goes through. I have EDS/POTS/MCAS and related conditions and it has taken me decades to get any proper diagnoses. The doctors haven't really got much of a clue and POTS meds do vary so much. I know Ivabradine can give people visual issues, but didn't with me. I do have tracking issues, eye pain, glaucoma symptoms, eye pressure problems, night blindness, light sensitivity, slow pupillary response etc. The eye pain has lessened since I have been on the low histamine/low inflammatory diet. It has helped so much with the IBS and gastroparesis. 

I hope your daughter gets some help and relief from her symptoms. The best things I do to help are some low impact exercise, mainly recumbent bike, the massive change in diet and relaxation through meditation. 

I think they just wanted me to go away. One of them I saw 9 years ago, didn't follow-up on the clear signs of POTS I had. They have no concern or interest at all. Not great!

Hi. I also got pretty freaked out when I read about CAN a few years ago, but it seems to be exclusive to diabetics. I may be wrong, but that's the impression I got. I know I had autonomic symptoms after glandular fever in 1984 and I only got diagnosed with POTS in 2014-15 and EDS in 2013. I am also pretty sure that I have MCAS/MCAD and maybe even raised Alpha-Tryptase...?? I am hoping to see some progress with diagnosis. I can't have SFN testing as two neurologists did not want to refer me. I am sure that I have it along with the autonomic neuropathy. I think the Alpha-Tryptase seems it could be genetic. All interesting stuff! 

Propranolol made my POTS symptoms worse. I also have Mast Cell Activation and this was made worse by taking it. I have read that it can! I no longer take it. I'm on Ivabradine now and even that makes my IBS worse. 

Hi. POTS is measured more by the heart-rate rise of 30 beats per minute when standing more than BP measurement. I am on Nortriptyline 25mgs at night. Amitriptyline was making me more drowsy.I take it for nerve pain relief along with Gabapentin for neuropathic pain. I also have extreme nausea from the moment I get up until mid-pm and sometimes all day. It eases when I eat and when I go to the loo, just a tad. I am on a low dose of Ivabradine currently and it has helped a little bit. I was put on Propranolol which was a big mistake as it made Mast Cell Activation far worse. I have permanent tachycardia. 

I will not have the shot. Mum has had it since 1968. I know of three elderly people who fell ill after the shot and within weeks all had TIAs. It has put me right off. 

I must admit I go a bit weird when it comes to sleep with wakefulness, sudden awakening, heart pounding, nausea, sweating and feeling very unwell.I also get jerking, sleep paralysis, sleepwalking and night terrors. They are get worse when I am stressed. I know of some people who get seizures linked to the EDS, POTS. Chiari and all the all stuff. 

I think the autonomic dysfunction started after Glandular Fever in 1984. The actual POTS symptoms appeared in 2005 and then worsened in 2007. I was diagnosed a couple of years ago. I have EDS and this was only diagnosed in 2013. It looks like I also have Mast Cell issues. 

Once the temp drops below 72f my limbs freeze. As it gets colder layers go on. My torso overheats so I can't win. 

Yes, i feel it's an autonomic issue, as the bowel/GI tract, heart-rate, lungs etc are also involved. I have had the same problem. I now double-pee, in so much that I have a wee, then then I have finished, I wait, then lean forward and empty again. I sit there until I feel empty and then it seems to be fine. 

On 10/09/2016 at 6:23 PM, Katybug said:

Yes, I have been treated extensively for tick borne illness but that seems to be behind me (if it ever really can be behind you) but I do believe it's what set everything else off.

Per TCP'S note, some antibiotics have an anti inflammatory effect, i.e. Flagyl. As mast cells are part of the inflammatory process, that's probably what's happening there. But, we can all have varying reactions to things, especially when we have mast cell issues. I'm extremely allergic to some antibiotics. Others are not a problem. 

Same here. I react badly to some and fine with others. My tolerance has improved generally with all foodsand meds since sticking to the low histamine, low inflammatory diet. 

On 10/09/2016 at 4:16 AM, krystal said:

those of you who feel better on antibiotics have you ruled out Lyme disease?

 

I thought it would be quite the other way around. My mast cell issues started after a few weeks of antibiotics. 

I think it depends on the antibiotic given. I've read of improvements on the mast cell forum and other anecdotal reports from several people on the Internet. Antibiotics either help or trigger mast cell activation. I think it's the type usedand where you are at with the condition. 

I think the lady, who's diet I follow, said she improved on antibiotics and she'd heard from others saying the same thing. 

Hi. Sounds as though it could be POTS with the HR increase. I have EDS, too. Standing is hard if your body wants you to be lying down all of the time. Have you discussed it with your doctor? I would ready the sticky posts at the top of this forum as there is plenty of helpful advice about what to take and do to help with the symptoms. You should see a cardio though, to be on the safe side. 

Firstly, please DO NOT PANIC! Stress will make it far worse, as I found out to my cost. 

I feel your pain and I KNOW what you are going through. I had all of this happen to me 9 years ago and I went to ER (A&E in UK) 7 times and admitted twice. The doctors were clueless at the time. I have since been diagnosed with EDS 3, POTS, Neuropathy (I am guessing Small Fibre, but the Neurologists do not want it investigated). I also have strong signs for Mast Cell Activation and I am in the process of getting that sorted. Knowing what I know now, I would say you have Mast Cell Activation. I wish I knew years ago that when I had Glandular Fever in 1984, (plus an operation and miscarriage), that this was causing most of my symptoms which got worse and worse. 

I now follow a lifelong eating plan with supplements to help with the condition and I am starting to feel much better. Message me if you want any details and help. 
Don't worry, as it will improve.