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 Desperate For Help: Chronic, Non-Stop Migraines
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Ninibini
True Blue Farmgirl

7577 Posts

Nini
Pennsylvania
USA
7577 Posts

Posted - Oct 04 2015 :  09:26:42 AM  Show Profile
Hi girls - good morning!

So many wonderful thoughts. Thank you! And thank you so, so much for your prayers.

He goes to the allergist this week, I think. I am anxious to see what they find out!

I just took him to a new neurologist this past week who is now addressing his sleep issues and chronic pain in a different way. (Kem - this doctor specializes in a couple of areas, one, in particular, is Lyme.) At first she checked out all his records, tests and films and felt this surely was a psychological issue. However once she heard about all the nasty hits my husband has taken to the head and saw the flat spots on his head as a result, she changed her tune considerably. She isn't ruling out CTE yet, either. One thing she is addressing that really makes me happy is that my husband has EXTREMELY low blood pressure. After a 16 oz. cup of coffee (which would put my BP through the roof!), his blood pressure was "high" for him - 102/60!!!! She was floored at all the medications and treatments they have tried for him, and didn't feel plying him with more meds at this point was a good idea. She was very concerned about blood flow to his brain, explaining that that alone could be causing a whole host of symptoms he is having. (The pain, the headaches, the rage, the muscle ticks, the shaking, the "seizure"-like attacks he is having at night, and the way his body has gone icy cold from head to toe a few times at night - I was afraid he had died on me!) She noted one of the meds the headache specialist has him on actually constricts blood vessels, which is probably making things worse, and, with the permission of the headache specialist, he is now off of that medication. Since he has hardly been sleeping at all, she prescribed muscle relaxers to help him not only sleep but also with his raging. She said if he can calm down and get some sleep, that may be a huge help. She also recommended that he add sodium to his meals (When do you ever hear a doctor say that?) to help get his blood pressure up (I rarely use salt as a seasoning.). She also does those botox shots that he has had to which he had an adverse reaction (he's still suffering a month later!). She said that she doesn't feel he needs to have another round of shots since they caused him so much pain. She said that his specialist is right, though. Sometimes they don't provide relief until the second round. She said it's ultimately up to him what he does, and defers to what my husband wants to do along with the recommendation of his headache specialist. It's ultimately up to him. If I had my way, though, he wouldn't have them. She advised him to continue seeing the psychiatrist, the private counselor and the headache specialist, and next month when he goes back, if the headaches and other symptoms aren't showing improvement, she is going to schedule him for a lumbar puncture. She said it is extremely important to keep the fluid pressure in your spine at a certain level, and if his is too low or too high, that also could be contributing to the problem. (God help him, I've had a lumbar puncture. They are no fun. I got beached brain and had to have a epidural blood patch to resolve the issue. If you don't know what that is, please look it up. It was a godsend, believe me.) ANYHOW, she will also be scheduling him for a sleep test, but not until we see how he does on the muscle relaxers. She also recommended a couple of supplements to help. I liked her - a lot. She made a lot of sense with her assessments and explanations. We will see how it goes.

Patsy, yes... You are SO right! He IS at risk. He gets regular counseling, and sees a psychiatrist who is very concerned at what he's going through. The psychiatric condition he has makes him dangerous to himself and possibly others. (Yeah...Yay...) The doctors all say this condition is exacerbated by these constant migraines, and that the condition is exacerbating the headaches. A vicious cycle to be sure. All of the meds they have tried have done nothing but make him so much worse. This is just not my husband. My husband is a sweet, loving, thoughtful, caring, humorous ball of laughter. Life was always fun, always full of love. There were times he was "off" but never like this. When this condition surfaced a couple of years back, our lives were severely altered, and it has only gotten worse with time. He is suffering so much. I hardly ever see the man I knew in there any more. Even a glimpse of him feels like Christmas. "Mercy" is the word I hear in my heart for him. But, believe me, it's tough. There are many days where I just want to run screaming into the night because he is very, very difficult to live with. He is ill. Very ill. Knowing that, however, does not make living with him easier at all. I just have to pull myself up at the bootstraps, put on the full armor of God, pray, put my arm around him, grab one arm of his cross and help him move forward. This is the hardest thing I've ever had to do. Ever. But it cannot possibly compare to what he is going through. This is one of those times that the marriage vows are tested and I just have to press into God as the third strand in our chord, you know? God really does help us all through this. He makes me strong, and sends me exactly what I need when I need it - without me even having to ask. He is amazingly wonderful!

Thankfully, after a couple of days on the muscle relaxers he is getting some sleep. He is snoring so loudly that I can't sleep! LOL! But that's okay - he is so exhausted and definitely needs it. He's going through withdrawal from the med they have removed, so he's a bit of a "joy" ;) ;| ;\ to live with, to put it lightly; but we've been dealing with it for so long, it's really nothing new. We're just taking it one day at a time. New day, new sunrise, new hope on the horizon! :)

Oops! 'Gotta run - sorry! Life is calling!

Love and hugs and so many thanks to you, girls!

Nini

Farmgirl Sister #1974

www.papercraftingwithnini.ctmh.com

God gave us two hands... one to help ourselves, and one to help others!


Edited by - Ninibini on Oct 04 2015 09:32:26 AM
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prariehawk
True Blue Farmgirl

2914 Posts

Cindy

2914 Posts

Posted - Oct 04 2015 :  5:50:22 PM  Show Profile
Nini--I feel so bad for what you're going through but you're right--God is always there for you. I feel bad for your hubby as well but at least he's getting some sleep--that can make such a big difference. As for his low blood pressure, my BP is sometimes very low--like 80/60 or even 57/43--and my dr. doesn't know why. It doesn't stay that low for very long and my dr. said it's important to stay hydrated as dehydration can cause low BP. With all the meds. you husband is on, he may be dehydrated and not even realize it. Coffee is, I believe, a diuretic. Does he drink enough water every day? I hope and pray he finds some relief and you find some answers for this suffering that he's going through. It must be frightening for you but I know God is with you, and him. Mercy is a powerful word. And no one is more merciful than God.
Cindy

"Come by the hills to the land where fancy is free; And stand where the peaks meet the sky and the rocks reach the sea.Where the rivers run clear and the bracken is gold in the sun. and cares of tomorrow must wait till this day is done"--Loreena McKennit
"In many ways, you don't just live in the country, it lives inside you"--Ellen Eilers

Visit my blog at http://www.farmerinthebelle.blogspot.com/
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Ninibini
True Blue Farmgirl

7577 Posts

Nini
Pennsylvania
USA
7577 Posts

Posted - Oct 04 2015 :  6:47:58 PM  Show Profile
Amen, Cindy... That was beautiful, and so very, very true! Yes, he drinks plenty of water. Water is our beverage of choice, and I am on top of him to ensure he gets enough. That was actually one of the first things they told him to do, as well as dropping caffeine all together. Thing is, though, since he has been home, he has started drinking a cup of coffee every once in a while in the morning. Not often, but I do worry about it when he does it, because he was told not to. I choose to pick my battles, though, if you get my drift. ;) That really IS low blood pressure you have! Ohmygoodness, that's scary! Please take care of yourself - I'm very concerned about you!!! His bp is usually very low, and constantly low; but as far as I know, not THAT low! Eghads! Do you do anything else special to try to get your bp up? Until now, his doctors have all dismissed it. But I'm very happy that this doctor is addressing it! One very scary thing for me is that three or four times now during the night, when he has managed to actually catch a few zzz's (he gets anywhere from 10 to 30 minutes here and there - I truly believe it's only out of complete exhaustion!), he has gone ice cold from head to toe - it has freaked me out each time, because his breathing was so low that I couldn't hear it and I thought he had died! I woke him each time and cuddled up next to him until his body warmed up again. It was the weirdest thing. That is partly why she wants to do a sleep study after she sees him next month. He has also started having these episodes at night when his body goes stiff as a board and he trembles uncontrollably. Again, this has only happened when he has managed to sleep for a short while. Each time, the shaking was so strong that it has wakened me out of a sound sleep (and once I realized what was happening, I counted up to 7 Mississippis before it was over!), but he had no idea it was even happening! He also has had muscle spasms all over his body - we've actually sat there watching them. And last week while having a sandwich, his hand and arm were shaking worse than my grandfather's ever did (he had Parkinson's), and he was completely unaware of it until I pointed it out to him! Does ANY of this sound familiar to you? This new doctor feels that it could all be blood pressure related... And, like I said, she will be doing a lumbar puncture next month if his symptoms don't improve. I had no idea that a person's spinal fluid/pressure could fluctuate and cause problems like this (and the headaches!!!). I mean, I've heard of spinal headaches, but only in terms of a lumbar puncture. This ought to prove very interesting, to be sure. I just really hope and pray that now something will give and he will get some relief! :)

Thank you for your insight and kind words - they mean so much!

Hugs -

Nini



Farmgirl Sister #1974

www.papercraftingwithnini.ctmh.com

God gave us two hands... one to help ourselves, and one to help others!

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prariehawk
True Blue Farmgirl

2914 Posts

Cindy

2914 Posts

Posted - Oct 04 2015 :  9:37:41 PM  Show Profile
Wow, Nini, that is scary. My normal BP is about 110/68. But it drops low for maybe a few minutes and I feel a little weird and then it's normal again. I've never had any shaking, except when I've been extremely scared or nervous. And then I'm always aware of it. I did go to the ER at the end of August (was afraid I had pneumonia) and they did an EKG. It showed I was at risk for heart failure (normal reading is 5-125 and mine was 375). I didn't have pneumonia, just very bad bronchitis and asthma. I did get an echocardiogram and a stress test. My dr. said my results were "normal" but that my heart wasn't working as efficiently as it should cause I was so sick. Still don't know why my BP drops so low. I think lots of time doctors only tell one tenth of what they know. I'm glad you have doctor you feel you can trust.
Cindy

"Come by the hills to the land where fancy is free; And stand where the peaks meet the sky and the rocks reach the sea.Where the rivers run clear and the bracken is gold in the sun. and cares of tomorrow must wait till this day is done"--Loreena McKennit
"In many ways, you don't just live in the country, it lives inside you"--Ellen Eilers

Visit my blog at http://www.farmerinthebelle.blogspot.com/
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Ruby V
True Blue Farmgirl

220 Posts

Ruby
Chilliwack BC
Canada
220 Posts

Posted - Oct 20 2015 :  11:44:17 PM  Show Profile
I had no idea that migraines could be so painful, how scary. Have you tried acupuncture? I don't know if it works on migraines, but I've had a lot of success with it stopping other pain I've had. I hope he can find some relief soon. Thanks for sharing his story with us. It was interesting to me to learn about migraines.


Ruby ~ Sister #3597
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marthajane
True Blue Farmgirl

196 Posts

Anna
Orlando FL
USA
196 Posts

Posted - Oct 21 2015 :  01:48:29 AM  Show Profile
I am sorry I missed this! Please update how the poor man is doing! Look into if he has a sinus infection. Find a good emergency room because it also sounds like he needs minerals! As in an IV ASAP! And please whatever you do get that man a 6$ bottle of hawthorne berry from walmart! Take 1 every 4 hours everyday! Also to Cindy please try hawthorne berry!

HAPPINESS IS BEING A MOM
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nut4fabric
True Blue Farmgirl

885 Posts

Kathy
Morgan Hill CA
USA
885 Posts

Posted - Nov 02 2015 :  08:30:35 AM  Show Profile
Hi Nini, Just saw this thread and wanted to mention a couple of things. First I have had daily migraines for a couple of years now and have tried every preventive that the doctors can think of. I have found that any form of soy in my diet will trigger them so I read labels like they are books to avoid the soy and I have found that it is in almost everything we eat, causing my to eliminate some things from my diet and find alternatives for others. I am currently trying MSM which is a over the counter supplement of sulpher which can be lacking in the diet. It is supposed to be good for chronic pain and in fact is recommended by a Chiropractor that I worked for. I am also using a magnesium spray , lack of magnesium can also lead to chronic pain. The advantage of a spray over a pill is it won't cause stomach upsets. Second I have very low blood pressure and always thought i was lucky until early this year when it started causing me to pass out and my heart to stop. Long story short, after a couple of admissions to the hospital and coding twice in one day a pacemaker was put in to keep my heart beating and I have to increase my salt intake and stay very hydrated to try and keep the blood pressure up. Don't see a connection between the blood pressure and head aches in my case and neither the MSM or the magnesium in affecting my heart in a bad way. Praying that you and your husband find some relief. Kathy
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ClaireSky
True Blue Farmgirl

1792 Posts

Julie
Arcadia WI
USA
1792 Posts

Posted - Nov 02 2015 :  11:31:50 AM  Show Profile  Send ClaireSky an AOL message  Send ClaireSky a Yahoo! Message
I used to suffer from migraines also. But I rarely get them anymore due to the fact that my doctor figured it out for me. She said to take away as much of it that your can of preservatives, additives, and artificial food coloring. It did the trick. Maybe that might be his problem also. Good Luck!

Julie
Farmgirl #399
May 2010 Farmgirl of the Month

Folks will know how large your soul is by the way you treat a dog ... Charles F. Doran
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Ninibini
True Blue Farmgirl

7577 Posts

Nini
Pennsylvania
USA
7577 Posts

Posted - Nov 04 2015 :  8:39:03 PM  Show Profile
Hi girls - Thank you so much for your suggestions. You are all so helpful. We've done so much of that already, all without success, but please do keep the ideas coming!

Kathy - I am just SO happy they got your condition under control - especially the heart issues. They installed a pacemaker on me almost two years ago, and I am very grateful for that peace of mind! I am sure you are, too!

Here's where we are at with this:

He had the allergy tests. He is allergic to grasses and trees, especially oak trees. They started him on drops to try to build up his immune system. It's not helping his headaches, at least not yet, but even if it only helps with his allergies, that will be a blessing! They did not say anything about changing his diet, but we have done all of that already and it didn't help one bit.

The new medicine didn't work, he went back on the other prescription. He's opting to just go back for the second round of botox in two weeks. Please say a prayer for him. The first time was horrendous. I still wish he wouldn't do it, but he says he has to try. When we go to the neurologist for that procedure, we're going to see if he just wants to do the lumbar puncture, etc., himself. My hubby is just so tired of going to all these doctors. He feels he has a good rapport with the neurologist/headache specialist, so he is sticking with him. If it makes him happy, at this point, I'm not arguing.

They are also going to see if his insurance will pay for genetic testing that will somehow help identify which meds will and will not work with his system. The hope is that they will be able to find adequate medicines and avoid any more of this trial and error stuff. Wouldn't that be a blessing?

And they want to try a new type of therapy to help him with the psychiatric side of this. I have to make calls tomorrow to see what is allowed within our health plan. I can't imagine what he is going through. Something has got to give. They have to find something to help him. I won't burden you with the details, but it's getting really bad. I am extremely concerned, and have all the emergency numbers in my phone, and I have the POA, both ready to go if I need to use them. Some days I wonder if I'll ever see my husband's joy come back, if I'll ever see the real him again. I keep praying!

Life... What a thing!

Hugs -

Nini





Farmgirl Sister #1974

www.papercraftingwithnini.ctmh.com

God gave us two hands... one to help ourselves, and one to help others!

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Annika
True Blue Farmgirl

5602 Posts

Annika

USA
5602 Posts

Posted - Nov 04 2015 :  9:58:08 PM  Show Profile
I'm trying to catch up on all of this. I'm so sorry that your poor husband is suffering like this. It really does sound lymes-like in a lot of ways. I've had migraines since I was a girl and am lucky that triptans usually take care of them nicely. What he (and you) are going through sounds like a nightmare. I'm afraid for both of you and hope that answers and especially, relief, is to be had very soon.

HUGS!!!!!!
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Ninibini
True Blue Farmgirl

7577 Posts

Nini
Pennsylvania
USA
7577 Posts

Posted - Oct 08 2016 :  08:15:12 AM  Show Profile
Hi girls -

Just a little update: My hubby has been having botox injections for his headaches every three months now for about a year. At first they did nothing but cause him soreness in the injection sites, and seemingly worse headaches, but I think it was the third round that he started to actually get relief. They worked for a little while but his headaches are slowly increasing again. After his last injection, he got another mind-blowing screamer about a week and one-half later. It slowly subsided, and now he is getting intermittent light-to-moderate headaches again. The doctor said that all they can do is continue with the injections every three months, so we are going to proceed and see how he does. Unfortunately, he has been diagnosed with frontal lobe dementia, so my concern is that as the disease progresses his headaches may worsen. Thankfully, though, he has two great neurologists covering both issues. I am sure they will do everything they can to help him as time goes on.

Thank you for being there and for all of your prayers. Annika, I'm so sorry I didn't respond last fall when you posted. As you can imagine, life has been a bit of a whirlwind. Please know I am very grateful for you, for your hugs and for your prayers!

Hugs -

Nini

Farmgirl Sister #1974

God gave us two hands... one to help ourselves, and one to help others!


Edited by - Ninibini on Oct 08 2016 08:15:51 AM
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Cozynana
True Blue Farmgirl

1123 Posts

Kem

1123 Posts

Posted - Oct 30 2016 :  12:10:49 PM  Show Profile
Nini, So sorry your hubby is not in the clear yet. You live in Lyme country. If you have not been to a Literate Lyme Disease Medical Doctor. Please get him into one. But, also I wanted to share a Dr I watch on YouTube.com that addresses the brain and Spect Scans. He has a bit of a personal introduction and then gets into his brain observations. He has a couple on YouTube.com this is just one of them https://www.youtube.com/watch?v=FTtKpBGjxd8 It may be worth your while to watch them. I think he even talks about dementia in his videos and has helped people with the issues. Also watch Dr Richard Horowitz's YouTube.com clips and see if any of his info rings true for your hubby. Another think you may be able to do is get an appointment with Dr Bob Miller, he is a naturopath in Pa and did my genetic testing. He is a pioneer in the field of genetic issues and very cheap compared to others I have used. Since you are in PA this may be possible for you. I love the guy, very nice and concerned about patients. He has a dietician I use also. I do all of mine on the phone and blood tests are drawn at my local lab that he orders. You have nothing to lose and everything to gain. Please email with questions if you have any. Just trying to help, been through the chronic illness
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