Updates

It has been a long time since I've posted anything. Time sure can get away from you, and quickly. The last I left off, I was experimenting with different treatments for my cluster headaches and, keeping my UCTD under control. Earlier this year, I was granted a Cefaly device for my clusters through the VA. This device has been a life-saver. I have gone from headaches lasting 6-8 days to lasting 1 difficult day and another day of just being irritated. It is still there, but I am able to function. They symptoms have also changed. If the cluster was going to get me on the right side of my head, my vision would be extremely blurry for 24 hours and then my joints would ache. Now, occasionally I will have achy joints. If the headache is coming on the left side of my head, I would have horrible toothaches, stiff neck, runny nose and a droopy eye. Now, a bit of a toothache. I use the Cefaly every day for 20 minutes. At first it was not a pleasant feeling, but now, I look forward to using my device in the afternoons. I am so happy to have been able to cut back on my meds. I think, some of them gave me slap-back headaches. I haven't thrown up and I haven't missed any work. If you are one that suffers from clusters, check into this device. It has saved my life. No more bed ridden days.
I've even been able to go for 3 mile walks or runs. Not every day, but several days a week. This is where my UCTD comes into play.
Now as far as my UCTD goes, it's going. I had my bi-yearly blood count done in April, and it wasn't the best. I knew before I had that done that my platelets were low. I have been more tired than usual for several months. What I didn't know, was that my white blood cell count had dropped too. So, all you sickies....stay away from me. LOL...
Running with UCTD is a challenge. I start off great. Sometimes I can run and do 3 miles, other times, I run and can only do 1 or 2. I don't quit, but I do walk then. UCTD is an energy zapper, no matter what is going on.

Cluster Headaches...."The Beast"

Well, it has come to my attention that other CH sufferers refer to their headache as "The Beast." That describes them perfectly. I found a website yesterday for folks that have these debilitating headaches. Why haven't I found this before???? I have been researching headaches for years trying to find help with mine. I spent about an hour reading and taking mental notes on a lot of information. I was on day 6 of my "Beast." As I read through the folders, it became apparant to me, that most of us have low vitamin and mineral levels. With having UCTD, I've known this for years. My vitamin d is always low. Along with magnesium and vit b. For a long time I took supplements to make up for what I couldn't get with foods. What I didn't know, was that I probably wasn't taking enough. With that, I only drink lemon water....all day, every day. I do this to help keep my liver clean and to flush out toxins, which my body hoardes. So, I was also washing out important vitamins and minerals too. I then went over all my files and papers on my bloodwork that I do twice a year. My vitamin d levels are low, but not low enough for anyone to pay attention to. Only, with having UCTD, those levels won't work for me. My UCTD antibodies destroy what is there. Thinking that it couldn't hurt, I took 8000 is of vit d3 and within 45 minutes my 6 day "Beast" was gone. Is this a fluke? Am I excited...absolutely not. I've had other things work for a month or two then come back. Most "Beast" sufferers take 10,000-20,000 iu of d3 everyday. During the "Beast" cycle, they bump it up to 40,000 iu. Quite a few sufferers have noticed improvement and some have even stopped it in its track. I'm fairly certain that I brought on last weeks "Beast" with working out in the heat for 2 days. I was drinking water like mad and sweating all my nutrients and vitamins out. Within 24 hours of being out in that nasty heat, the headache hit me hard. I barely made it home from work. Usually I get a 6-10 hour notice of one on the way. This time, only 30 minutes.
Please know that I write these blogs in hopes of finding others out there like me. Some may be suffereing from being misdiagnosed, like I was for 7 1/2 years. I am not looking for sympathy. Just knowledge. Also know that when I am "busy" it is because I know this "Beast" will return within a few weeks. I have to get things done. I lose 6-8 days at a time when they hit. That may not seem like much, but in a year, that is 48-60 lost days. With these, combined with UCTD, I am an insomniac during the cycle. That is from the pain. I sleep, if you can call it that, sitting up. I can feel the veins in the back of my head and neck pulsating. I put ice on my head to the point of my skin getting burned. My others senses are highly elevated. Whispering can feel like a bomb in my head. Food smells and tastes awful. I fidgit trying to find a way to rest. I will sometimes sleep on the cold floor to relieve some of the pressure. No lights. I take shots and tablets to help. Sometimes they work for 6-10 hours, sometimes 2-3 hours. I am limited to the amount I can take of each. Most CH start in the middle of the night and I hate getting up to go give myself a shot. My leg is one big bruise from the shots this past week. I can't even think of going back to work or school with those kinds of numbers. I am thankful for the folks that I do work for and their understanding when I have to call off or rearrange my week.
I am blessed with an amazing family and group of friends that let me vent during these cycles. I try not to vent very often...there are so many people out there worse off than me. I have several friends dealing with the ravages of cancer. I can deal with this. As long as I have these, I will continue to educate myself and try to find the treatment that works for me. If I can help 1 person with CH and get them to the right website or right doctor, then it is worth blogging about.
Here's a link to the CH website. www.clusterheadaches.com. So much information out there.

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Cluster Headaches

Since my last post on migraines/cluster headaches, all has been pretty good. I was able to tour Gettysburg in the heat and not come out of it on the wrong end of a headache. We did an enormous amount of walking. Before being treated with Verapamil, I would have had a horrible headache. A few days after returning from our vacation, I had an appointment with the neurologist to track the progress. In 6 weeks, I had one headache. It was a 2 on a scale from 1-10. I only had to use one Maxalt. I've have now been released from care for 5 months, unless there are problems or I start getting these cluster headaches again. Sadly, that weekend I got a mother of all headaches. It lasted 6 days. Part 2 of the headache ended up being a 10-12 in pain level. I was down for 3 days with it. The shots would only work for a few hours and the tabs were worthless. I was so worn out with that one.  I put this one back on stress. There is a lot going on right now. We're are helping our son go over paperwork on buying his first house. We have to be very diligent. The realtor was great until we found the house, but now, I feel he is as shady as the guy flipping the house. We decided to walk away because they didn't feel they needed to listen to the home inspectors comments. After a very long weekend, the sale of the house is back on, with our demands in check. I can't wait to be finished with all of this. I need to be rid of these people. I really manage to stay stress free, but sometimes it just seeps in.

UCTD and headaches

What a wild few months I've had. I have a new neurologist since I received my VA benefits. He is a blessing! After 7 1/2 years of being told and being treated for migraine headaches, he did further testing and has come to the conclusion that these are cluster headaches. Generally speaking, women are seldom the victim of cluster headaches. What is a cluster headache? It is hell~worse than a migraine. It is called the suicide headache. This headache is rarely treatable with migraine medicine alone. Cluster headaches go in cycles. Cluster headaches generally start at night. Mine start between 10 PM and 1 AM. Mine for instance, arrive every 3 weeks like clockwork. If it is starting on the left side of my head, I get a horrible tooth, jaw and eye pain for 24 hours. There is no chewing of food. Then, I get pain so severe it travels from the eye to the back of my head for up to 3 days. Once this headache is gone, I generally have a one day reprieve before part 2 begins. Migraine meds rarely worked. I eat Maxalt like candy. If the headache begins on the right side of my head, I wake up with blurred vision in my right eye. Then, my hands hurt so bad that I can't make a fist. Towards the middle of the day I must sleep. I get so tired I can't function. Once the headache starts, it travels from behind the eye to the back of my head. I can feel the vein pulsating. I can't sleep lying down because of the pressure on the back of my head. I sleep maybe 2 or 3 hours. During the headache, on either side, I can seldom move off the couch. Sounds are unbearable. Indoor lights don't bother me, but sunshine beating down on me is painful. These also last 3 days. So, one week a month, I have this headache. Youtube has very graphic videos of cluster headaches. I am thankful that mine are not as bad as the ones I've seen.

Conventional treatments I've tried.

• Maxalt
• Topomax (Dope-a-max)
• Inderal
• Tylenol with codeine
  
• Sumatriptipan shots

Natural remedies

Gatorade

Caffeine

Black Cumin Seed Oil (liquid and gel cap)

Magnesium Oil

Feverfew

Turmeric

Ice, heat, both

Epsom salt baths

Honey and cayenne pepper

Ginger (mostly for nausea)

And so many more that I have forgotten about. 7 1/2 years of every remedie known....

So far so good with this new neurologist. He has a treatment plan in place and we are still keeping track of these cluster headaches. I am continuing with Maxalt, but we have added Verapamil. This is a blood pressure medicine. I do NOT have high blood pressure, exactly the opposite, until right before the headache. Then my blood pressure shoots up. We were on 120 mg a day, but have recently moved it up to 180 mg a day. I am completing my first full month on this medicine. Results...part one of the headache was less pain and 1 fewer day. Part 2....not too much of a difference. The right side of my head is the one that is the worst. This time I had to use my injection. A plus with both headaches, I was able to get up and move around, even go to a party.

I have now been on Verapil 180 mg for over a month. I did get part 1 of the headache on my left side and it was awful. With that being said, I had just had an extremely busy two weeks with very little rest. It is 10 days later and part two hasn't started. I did get just a few minor pangs, but after work decided to be "quiet" and rest. This morning I feel great and plan on going for a run before work.

Today it has been more than 3 weeks and no sign of headache part 2. I am a happy girl! This is the longest I have gone without a headache in 7 1/2 years. Could this be the "cure" for me?

Since I've not had these headaches, I am back to running. I ran 3 miles several times in the past week. I love to run. It is my time. My time to reflect and talk to God. Unless you are a victim of cluster headaches or migraines that last for days, you can't imagine what a relief it is not having to schedule every little thing I do around them.

 

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UCTD and migraine update

A whole lot has been going on since my last post. First of all, where did summer go? It was here and gone~ just like that. Luckily I had no major UCTD issues this summer. I did have a fair amount of migraines. One (they last 3-6 days)every 3 weeks or so. Sadly, they just take me out. I can do nothing buy take my meds, and they make me tired, and rest. I've also been doing more research on natural treatments for migraines and thought some of them worked.
I have added butterbur, riboflavin, d3 and oil of oregano to my diet. For a while, this combination along with my evening Plaquenil seemed to reduce the severity of the migraine. Then, 2 migraines ago, wham....a migraine to beat all migraines. Blurred vision, stiff neck, nausea and just plain sick.
I have been reading about Black Seed Oil and see that it has rave reviews in regards to migraines. What the heck, I decided to buy some and give it a try. I searched many websites for instructions on the best method to mix the Black Seed Oil. The one I found had me mix 50/50 black seed oil and good quality honey. Take 1 tsp. of the mixture 3 times a day. A tsp. is a lot. This "shtuff" doesn't taste good at all. Have a juice chaser handy. Also, rub some on your forehead, temples and neck. Put some in each nostril and breathe too. After the initial dose, the migraine eased off to a point where it was barely noticeable. I was even able to work. After the second dose a few hours later, my migraine was completely gone. Was this a fluke? I sure hoped it wasn't. A couple of days later I could feel the onset of another migraine. I'm pretty sure the change in weather is what was bringing this one on. Immediately I took my first dose of black seed oil and honey. I decided to take an Epsom salt bath too until it had time to do its magic. Oh man, it wasn't a fluke. It was nearly gone within 30 minutes. I took a second dose later that afternoon and it was gone and I haven't had one since.
Most of the information I read on black seed oil has you taking 1 tsp of just the black seed oil daily (no honey). Only use the honey when you have a migraine. I'm not sure exactly what honey has to do with it, but who cares? Whatever works, right? Also, for the migraines, only use the oil for the migraines. It is quickest and most potent. I am going to purchase the vegetable caps of black seed oil for my daily use. Please, please...let this be the answer to these nasty migraines.