Insomnia Medication & Hypo Symptoms Management Advise Please

[Mikey69]

Hi all,

Well a lot has happened snce my inital posts. i am finally wrapping my poor exhausted brain around what is going on in my body thanks to the helpful advise from all those who kindly responded. So thank you :-)

Current update:

I am still struggling with chroonic insomnia. I'm on day 60. I'm getting zero sleep without medications. And between 5 - 8 hours with meds. I'm currently taking a beta blocker to calm my loud pounding heart down at night and lower myy insomnia induced high blood pressure (Bisoprolol Fumerate 3.75mg) I'm also taking 2mg Diazepam (Vallium) every night just before bed. I don't like meds though - especially benzos! I'm trying ot sleep without them inititally, but i just can't get to sleep.

The rapid scary weight loss has now stopped. I had to eat 3,800 calories a day just to maintain my weight at 76kgs! i was getting sick of food! lol! Thankfully this has settled somewhat. I'm still having to over-eat, but not quite as much.

I've seen my GP so many times i've lost count in the past two months!

I'm really struggling with hypo symptoms, but without having low blood sugar. I'm having typical symptoms every day, despite changing my eating habits to include/smaller, more frequent meals/snacks. I'm also eating typical slower release hypo foods (I already ate well anyhow, but tweaking is needed). I've got it kind of under control, but i would rather avoid hypo symptoms altogether if i can.

The problem at moment is that i'm now putting weight back on! Talk about yoyoing! lol! I am trying to cut the calories back to around 2,800 daily, as i was maintaining my weight at this. However, I start to get hypo symptoms if i eat less than 3,100 calories daily. I'm trying to learn all i can about hypoglycemia, and am changing food types, etc. but it's early days and i'm still getting it wrong - hence the symptoms.

Worse still is that i suspect it is low blood sugar during the night that is causing my insomnia. I try to have a light snack around 9pm, to keep me going through the night, but i suspect this isn't sufficient. I frequently wake up with a loud pounding heart, probably as a result of my body producing exessive adrenaline to compensate for low blood sugar. This is a well documented symptom of low blood sugar. Then i can't get back to sleep thanks to the adrenaline. Very frustrating!

On the nights i can't get to sleep i am in real trouble between 3 - 5am. I end up with the most awful stomach/digestive symptoms - hard to describe, but very unpleasant. I wouldn't say painful, but profundly trembly, shaky, gurgly, rumbling, very hollow, twisted feelings, with my heart pounding and faster than it should be at rest. i think this has also woken me up frequently. I have eaten emergency food on a couple of occasions (banana, shortbread biscuits, fruit juice) and my body has settled and i've been able to get some sleep. However, this is all extra calories that will be contributing to my current weight gain. Does this sound like a low blood sugar event?

I am hoping some kind souls out there could give me some info on 1) how you safely reduce your daily calorie intake so you don't gain weight, but don't have hypo symptoms, 2) How do you eat in the evening so your body has enough blood sugar to get you through the night. I'd like some sleep soon! haha!

FInally, Kateybg could you please briefly explain to me what mast cell activation is and how it affects Dysautonomia. My GP has suggested i take Cetirizine 10mg daily, but i'm not sure i have that problem,

Thanks to all in advance,

Best Wishes,

Mike

[Mikey69]

P.S. Also, i'd like to know what medications people are using for insomnia,

Cheers,

Mike

[Katybug]

Hi Mike,

I'm about to go out for a bit. I'll get you some mast cell information tonight.

Katie

[sue1234]

I have had many issues with low blood sugar. The key is prevention! Always eat protein with your carbs, and fats if you tolerate them.

And, I do also wake up with pounding heart and heat from adrenaline rush due to low blood sugar, and have for years. It's like, if I don't eat, I am more steady, but the minute I start eating I'm on a roller coaster. So, I tend to not eat after about 5:30 p.m., so I can let all the insulin craziness settle. I have noticed other hypoglycemics eat protein with a tiny bit of complex carb at bedtime to steady things out.

You just need to see what works for you.

[corina]

Mike, I think you'd best talk to a dietician to help you answer your questions. Have you checked your blood sugars during the day/night? When I did just a few months ago it turned out I have hypo's as well as hyper levels. With the help of a dietician we decided on what diet would work best for me. Everyone is different so we can't really give you any advice on what would work best for you! Good luck figuring things out and let us know how it goes, okay?!

[looneymom]

Hi Mike

Have you tried any protein shakes? GNC store sells different kinds and they are gluten free. They can be mixed with water or milk. They would be filling and you would have a way of counting calories. My son likes the GNC Pro Performance Amplified Wheybolic Extreme 60 Chocolate but it comes in different flavors. 60 grams of protein per serving and 2 grams of sugar per serving.

For more information on this product go online. GNC has all of their products online.

[Katybug]

http://forums.dinet.org/index.php?/topic/26734-mast-cell-disease-explanation-and-specific-diagnoses/

Hi Mike,

The link above has two different papers linked in it. Both papers are very thorough and can give you a clearer understanding of the various mast cell diseases. What most of us are talking about on this forum is mast cell activation syndrome (MCAS).

MCAS if a functional issue with your body's mast cells. Mast cells are part of your body's immune system and they are produced in your bone marrow. People with MCAS generally have normal mast cell counts, however the cells do not behave correctly. They are basically overactive. The mast cells are an integral part of the chain reaction that produces allergic reactions. Although it is more complicated than this, in layman's terms, the mast cells have overreaction to things you are allergic to or have inappropriate reactions that are similar to allergic reactions to things that they shouldn't react to at all. The reactions run from minor such as a couple localized hives to severe such as full anaphylaxis and everything in between. However, because mast cells contain highly potent biochemicals such as histamine, prostaglandins and heparin, the constant release of these chemicals in people who have MCAS have far reaching consequences on the body, many of which do not look like allergies such as neurologic symptoms, osteoporosis, severe GI upset, etc.. MCAS is a complicated disease to understand and even more complicated to diagnose.

I urge you to read both articles in the link above. The second article also has several Figures embedded in the article. These figures have very comprehensive information on the plethora of symptoms and on the diagnostic process. If you have the slightest suspicion that MCAS is a possibility these articles may help bring things together for you.

[Mikey69]

Hi katybug,

thanks very much for the link to the Mast Cell articles. I will read those later. I just want to wrap my brain around the concepts then i can decide if it's an issue for me. I'm not sure it is. :-)

[Mikey69]

Hey,

thanks for all of the replies regarding diet. I figured a dietician would be the way to go. I am actually awaiting a referral to one. However, i am in the UK, so it could be a while! Honestly, it's like trying to shovel sand with an eating fork!

I am working really hard to understand hypoglycemia then i can manage my diet as best as i can in the mean time. I purchasd Hypoglycemia for Dummies - it seems really good thus far, and it's nice and easy to understand for my poor sleep deprived brain! :-)

I actually had a better day yesterday, and didn't put any weight on, but i am still trying to figure out how often i need to eat. I'm still getting early symptoms every two hours or so, so i'm still not getting it quite right :-)

[sue1234]

I seem to have worse times of the day with hypoglycemia. My bad time is all morning. So, during morning I eat every 2 hours, and I stick to it. In the afternoon, I can go 3 hours or a little more, and still be ok.

And because I eat so often, I eat just a little. For instance, for my first lunch(10:00), I eat half of one slice of bread with my toppings, then at 12:00, I eat the other half. I am used to eating small amounts, and it does all keep me more steady.

You will have to see what works for you.

I can say, if you react to carbs, you don't have to eat so many. I'm saying this because the dietician will most likely give you a diet that has higher carbs than what a carb-sensitive person can handle. Take all that into consideration.

[corina]

When I started measuring it turned out that not only did I have hypo's but also the hypers. To try level out the enormous swings I started a low carb diet which worked really well for me. I think it's really important to find out exactly what is going on. I had the longterm blood test (where they level out totals of blood sugars) and it came back okay. Only when I started to take measurements myself (several times a day) the high and low levels were discovered. I had no idea and was really at a loss what to eat. I think I'm trying to say that you need your doctor and a dietician to help you find out more and learn how to work with the results! Good luck Mike, I'm sorry you need to wait for so long!

[Mikey69]

Hi All,

thanks for the diet advice. I have started experimenting with smaller meals and eating 6 times per day, which is really helping, as is a late night light snack of protien/oats. I'm also now playing around with quick/moderate/slow release foods, which agian, appears to be having a positive impact. It's early days yet, but i haven't been at the point of collapse for a few days now :-) Yaaaay!

I'm also reading Hypoglycemia for Dummies- it's a nice easy read when you're as sleep deprived as i am :-)

[corina]

Great news Mike!

[tampafd]

Since developing this autonomic dysfunction or whatever it is I have, I will wake up in the middle of the night and can't fall back asleep. I have always taken meletonin but it not as effective as it use to be with this condition. I have added benadryl to aid in sleeping.

[Sylvie33]

Comment on Benadryl and to reply to Mike about meds.

Intractable insomnia with some panic was also one of my (many) presenting symptoms for dysautonomia which came on suddenly just this past April for me (precipitating events included a toxic reaction to medication and emotional trauma). It has gone on unabated for me since then.

I had my second two-hour meeting with my new neurologist/psychiatrist last night (amazing, eh?) and he suggested that I stay away from Benadryl (which I hesitantly tried): he said it is a dirty drug and can cause problems that may be exacerbated by neurological disorders.

In addition, I was also taking 1 mg of Klonopin (and yes, I also fear this drug) to help me sleep. I was breaking it into four doses, using it as I woke repeatedly. He suggested I take the full dose at bedtime and perhaps follow-up with one .25 mg dose if I wake.

I did this last night. I slept from about 10:30 until 2 am without interruption and then took the .25 and slept until 5am. I also remember waking up on my own and falling back to sleep without anything. This is a clear improvement. In spite of the addition of .25 mg I feel more rested and clear-headed this morning than before.

As noted, I do not like any medication, given my history, but sleep is so important I will continue. I am scheduling an appointment is a **renowned** dysautonomia specialist today (even though this is private/US, it will take months), so I will continue this supervised regimen until I have more feedback and control over my symptoms.

As for "hypo" issues. You write you tested negative for low blood sugar, is this correct? If so, have you read the new thread here about 4pm "adrenaline" rushes (panic) ? -- Good explanations centering on dysfunctional cortisol release which is clearly one intrinsic aspect of dysautonomia. I think this may be the case for me and perhaps for you too. If so, the nighttime eating would not be necessary (good news if you are gaining weight).

The bad news is I have yet to hear of a good antidote for this.

I just wished to pass on this information (with the usual caveats about medical advice).

Best,

Sylvie

[looneymom]

I don't know if this would help with sleep but my son takes extended release clonidine at night. It is used for patients that have the hyperpots condition. It helps my son fall asleep and stay asleep through the night. This medication was prescribed by a neurologist. Hope you are sleeping better since you have started eating smaller meals. BTW this medication also lowers blood pressures.

[Mikey69]

Hi Tampafd and Sylie,

It is very good to meet you both.

Sylvie,

thank you so much for taking the time to write such a detailed response. i really appreciate it. i am sorry to hear you too are having chronic insomnia problems - it isn't good :-( I managed 1 week off the Diazepam last week, got one pretty good night, then sleep went downhill rapidly, culminating in my have two consecutive nights with no sleep at all, so i was very, very, poorly yesterday. Poor sleep and CFS/FMS is a BAD combination. Last night i took 500mg naproxen for pain (made me feel quite weird) and 2mg Diazepam. I slept very well, but awoke this morning feeling like a cheap dirty druggie. It's 3pm and i'm still not clear of side effects. I suspect mix of drugs is responsible. So, im going to try Ibuprofen - it's not as potent as Naproxen.

I will have a look at the recent post on adrenaline surges. Thank you for pointing that out to me.

Thanks again, I hope you feel better/get some sleep soon,

Mike