Psalm 23

Hi Issie,

I'm so happy to hear that you have continued on the road to improvement. How exciting and inspiring. I think of you quite often and am so thankful to you for your perseverance in educating physicians about MCAD and treatment. It's made a huge difference in my life.

Janet

What a wonderful report of improvement. How exciting.

You're so welcome. I'm really happy for you. I am so incredibly thankful to my neurologist for his willingness to delve into the realm of immunology. It's so difficult to find a doc who is able and willing to try and put the pieces together and come up with an action plan. It does sound like you are on the right track. How exciting.

Janet

Hi YolainBlue,

I'm so sorry you have been dealing with such health challenges but very glad you found a MCAS specialist you were able to get in to see. My PoTS neuro is managing my mast cell issues. I was started on a mast cell cocktail about 7 months ago which was recently altered somewhat ( a more aggressive approach ). It has made a world of difference with many of my symptoms. Allegra is one of the many medications I am on. You're right in that it takes several weeks before you know how great a response you will have to particular mast cell medications ( H1, H2, cromolyn etc. ). The whole medication thing is really trial and error. Everyone responds so differently. Best of wishes to you. The potential for improvement can be significant.

Janet

Hi Rachel,

I'm sorry Tyler is still suffering so. I was prescribed LDN several years ago by my then Rheumatologist. First 3mg then 4.5mg. I tried it for 6 months but unfortunately realized no benefit from it. I suffered no ill effects from it either. I thought it was worth a try as some have benefited from taking it. You're right in that it has to be obtained from a compounding pharmacy and insurance coverage is a problem. I ran into a friend recently who is a pharmacist. He works in a compounding pharmacy where he says they handle a fair amount of LDN prescriptions. I hope you have success with this medication.

Janet

I also experience physical challenges associated with having sex. My legs shake and I tire quickly. Afterwards I feel completely trashed and pretty useless. Much worsened OI symptoms and extreme exhaustion. I have wondered for me if this is a mast cell triggered response. I am on a prescribed mast cell cocktail but it doesn't seem to help with this issue. I have found that having sex at night and being able to sleep the post sex symptoms off helps as opposed to having sex in the daytime and having to try and function afterwards. I also have thermoregulation issues so the room temp has to be just so. It can be very frustrating I know.

Janet

My prescription for modafinil was for 200mg daily but I was told to try taking half of one to start with and I could take it in a divided dose if desired. I tried taking 100mg for two days and found much to my disappointment that I experienced unacceptable side effects. Simplifier to what happened with Nuvagil except for the insomnia part. For me I guess this class of medication exacerbates all of my other symptoms so it's definitely a no go for me. You don't know until you try though. I'm glad it's helpful for you.

In regards to Prednisone, I have been on it short term for acute episodes of things (pleuracy, asthmatic bronchitis, skin lesions etc. ) but I do not take it on a regular basis. I think someone else here does. Like you I crave salt. I have been told to consume 8 grams a day but I'm sure I consume much more. The 8 gram recommendation was based on my 24 hour urine sodium.

How awful. I'm so very sorry. I hope your appointment went well today and you recover quickly.

Janet

Going gluten free has helped my brain fog as well as my neuropathic pain.

Hello CRPN and welcome to the forum. In regards to your Modafinil question I am actually just starting it tomorrow so I will let you know how it goes. I had it prescribed by my Pulmonologist for excessive daytime sleepiness secondary to sleep apnea. I had been on the fence for a long time about whether or not I wanted to try it. I have a number of coexisting conditions that could be causing excessive daytime sleepiness as well as fatigue and cognitive dysfunction etc so it's hard to say if I will get any symptom relief or not. My PoTS Neuro thought it might be helpful. I'm wondering how tolerable the side effects will be though. I did try Nuvagil several years ago which was a horrific experience. At this point I'm willing to give anything a try so we'll see what tomorrow brings.

Janet

You're welcome. I'm sorry you are having to deal with this situation. I all too well know the frustration of dealing with doctors that just don't get it. Hopefully your family doctor with be able to help you through the lyrica discontinuation process.

Janet

You must wean off this med very slowly. I was prescribed Lyrica several years ago now by my then Rheumatologist. I was on 100mg daily for 18 months. It was prescribed for fibromyalgia. After a while I started to realize that this med was causing me problems with anxiety and depression and I wanted off. I told my Rheumatologist that I wanted to dc the Lyrica and take something else so I was given very specific instructions for slowly titrating down the dose. It took two weeks to do it. Basically the contents of the capsules were diluted with water and measured out to a decreasing dosage each day. I'm sorry I can't be more specific but the important thing is to not try and dcd it too fast or you will get discouraged with extremely intolerable side effects ( I tried that ). Even if you dc the Lyrica slowly withdrawl side effects are hard to avoid but bearable. I'll be honest with you getting off Lyrica was difficult ( dizziness, severe tremulousness, insomnia, nausea etc.) but for me well worth it in the end.

Best of wishes to you,

Janet

I take ALA for small fiber sensory neuropathy not for autonomic neuropathy.

What an amazing device. I hope it provides some answers for you.

Hi Rachel,

Thank you so much for sharing the interesting articles. I have been taking ALA 600mg daily for quite some time now and have found I do get some pain relief from it. A few times I have forgotten to take it and noticed my pain level was higher. Since starting on a mast cell cocktail a few months back I have realized an enormous reduction in neuropathic pain however for the pain I am left with I feel the ALA helps. I have not noticed that ALA has any effect on my b/p. I hope you find something that will help with Tylers pain. My heart and prayers go out to him.

Janet

I get tremors as well. Mine would appear to be related to high NE and dopamine levels. A number of years ago when the tremors first began I asked the Cardiologist I was then seeing why I was shaking so much and he said it's from high catacholamine levels. Basically an OI compensatory mechanism. The tremors I have used to be severe. The longer I tried to stand up the worse they got. In conjunction with the tremor came all the other OI symptoms, nausea, dizziness, shortness of breath etc. I did ultimately have supine and standing cat levels checked at Mayo and they were extremely elevated. Now that I am on Clonidine and Mestinon the tremor is significantly reduced but will return if I am upright for too long or am having a really bad day.

Janet

Hi Becia,

I'm so sorry for all that you are going through. I can't imagine the difficulties you go through. Your perseverance is truly inspiring. I hope that you realize some benefit from taking Mestinon. I was started at 30mg three times a day which was then increased to 60mg three times a day two weeks later. I have been on it now for three years and have found it to be extremely helpful in terms of decreasing tachycardia and generally helping with OI symptoms. Hang in there.

Janet

The very best of wishes to Tyler. How encouraging that the doctor is pleased and that Tyler has been able to tolerate the treatments. I pray they are successful.

Janet

Thank you Raisin. It can unfortunately be a long road trying to get answers and help. It really is all about seeking out the experts in the field. It wasn't until I finally realized who I needed to see that many of the pieces began to fall into place. Except for this odd antibody that turned up I have finally been given diagnoses that make sense and medications that help. I hope you make progress on your journey. I'm so sorry about your abdominal pain. That definitely needs follow up.

Yes. God bless us all.

Janet

Hi Raisin,

I'm sorry you are having to deal with this antibody issue as well. I tested positive for the calcium channel n-type antibody this past spring. I had previously tested negative so it came as a complete surprise to my Neuro and myself. Because of the cancer connection as was pointed out by Natops at the very least you should be retested at a later date. I was advised to have a CT of the chest, abdomen and pelvis as well as a mammogram and gyn exam. I am also scheduled for a repeat paraneoplastic panal next month. I was told by my hematologist/oncologist that if there was no cancer detected after 2 years then the likelihood of it developing was very slim. My Neuro said the presence of this antibody was unexpected and is of unclear significance and that this antibody can be a marker of an autoimmune process or sometimes can be a marker that there is a small cancer hiding out somewhere. Many unknowns here. I'm glad you have follow up.

Janet

Hi Jon,

I left you a pm regarding your inquiry.

Janet

kitt I am taking the liquid form of Cromolyn ( generic form of Gastrocrom ) 200 mg four times daily. I take it 30 minutes before each meal and at bedtime. I squeeze two 5ml ( 100mg each ) plastic ampules into 8 oz. water. Following this regime certainly does require a bit of discipline but one adjusts pretty quickly. I carried out an enormous amount of research on this medication as well as MCAD in general before committing to trying Cromolyn. My concern is long term availability. It took three pharmacies to get this prescription filled and every time I get a refill on it the pharmacy that was able to get it ( Walgreens ) has had to find a different distributor.

Hi Kitt,

I'm glad you've found Cromolyn to be so helpful for you. I have been on it for three months now along with Allegra and Pepsid and have realized significant improvement in terms of mental clouding, neuropathic pain, some PoTS symtoms, GI symptoms etc. I also implemented an elimination diet and was able to identify a number of problematic trigger foods. I hope you continue to realize improvement with Cromolyn.

Janet

That's great story. I'm so glad you will be getting in to see Dr. Cannom and being evaluated. It's so encouraging to find a dysautonomia specialist who can help you get to the bottom of your problems and recommend an effective management regime. It's nice that he works out of several different locations. I found it very gracious of Dr.Cannom to extend an invitation to his dysautonomia support group to patients other then his own. Best of wishes to you.

Hello story and welcome to the forum. While I am not a patient of Dr. Cannom's, ( I already had a PoTS specialist ) I did attend his first dysautonomia support group meeting last September and encountered a number of his patients who were very pleased with Dr. Cannom. He is actually at Good Samaritan Hospital not Cedars unless he recently changed hospitals. I can't say if he would require a ttt be done for a diagnosis but that is usually considered the gold standard. The use of beta blockers certainly came up in the meeting as did the use of other appropriate medications and treatments for the various forms of dysautonomia. The support group meeting was very interesting as there were a number of different speakers present and ample time was left for questions and answers. I met Dr. Cannom on the way out and found him to be very approachable and personable.

Janet